Our Member Organizations


Find Your Local Alliance Member

Use the search below to connect to an organization in your area.

Filter Members by Country




Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Advocacy - Research

Abrale

The ABRALE – Brazilian Association of Lymphoma and Leukemia works across the country to democratize the treatment and quality of life of people with hematologic malignancies to guarantee universality, equity and integral service for all.

Our activity:

Patient Support
We have a multidisciplinary team with: psychologists, who assist the patient in coping with the disease, nutritionists that elaborate personalized diets, lawyers, who give information on the rights guaranteed by law and advocate for policy improvements, nurses and social workers, who clarify doubts about the diseases and a team with committed professionals that work to improve prevention, access to treatment and better outcomes continuously.

Education and Information:
We produce information material, i.e. leaflets, booklets, videos and the Abrale magazine for patients, family members and health professionals. Abrale’s website and social networks are sources of information and contact with all Stakeholders. We also provide access to the best experts at the Abrale Meeting, a biweekly event, with free lectures, and also through Chat Abrale, an online tool to connect patients and caregivers to doctors and health professionals on different issues. We also offer sophisticated on-line educational to health professionals and physicians of the country, contributing with early diagnosis and care improvement.

Research and Data Organization:
We take advantage of technology advancements to improve knowledge about oncology facts in our country.
From patients, we have our own registry and collect real world evidence . Also we use government open data and analyze them and publish in a dynamic and interactive on line plataform. Our data scientist contribute to the understanding of the oncology scenarium.

Public policy and Advocacy:
We work intensively in the area of ​​advocacy to represent our patients before the Government. We partner with social organizations, participate in the National Health Council and events related to the theme. We collaborated to advance important laws, which greatly benefited the health system and Oncology in Brazil. Our strategy includes actions to improve public and private care in oncology , transparent and efficient use of public resources and focus on better clinical outcomes .

Contact : Merula Steagall and Dina Steagall
Email : merula@abrale.org.br / dina@abrale.org.br

www.abrale.org.br


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses

aeal

La Asociación Española de Afectados por Linfoma, Mieloma y Leucemia fue constituida por pacientes el 8 de Octubre de 2002 y es una asociación de ámbito nacional declarada de Utilidad Pública por el Gobierno Español.

Con los años, AEAL ha comenzado a trabajar con pacientes con diagnóstico de diversas patologías oncohematológicas tales como linfoma, leucemia, mieloma, síndromes mielodisplásicos y síndromes mieloproliferativos.

Los objetivos de AEAL son la formación, información y ayuda a pacientes oncohematológicos y sus familiares; prestando asistencia telefónica, apoyo psicológico, asesoramiento jurídico, apoyo social e información para los pacientes en el diagnóstico y los tratamientos sobre sus enfermedades. AEAL está gestionada principalmente por pacientes que desarrollan su actividad en calidad de voluntarios ofreciendo información y apoyo emocional. Siendo estos servicios y actividades gratuitos para los pacientes y sus familiares.

AEAL (Spanish Group of Lymphoma, Myeloma and Leukemia patients and relatives) was constituted by patients on October 8th, 2002 and is a nation-wide association declared of Public Utility by the Government of Spain.

Over the years, AEAL has begun working with patients diagnosed with various pathologies oncohematological such as lymphoma, leukemia, myeloma, myelodysplastic syndromes and myeloproliferative neoplasms.

AEAL goals are training, information and support of oncohematological patients and their relatives providing phone assistance, psychological support, legal advice, social support and information for patients about their diseases, diagnosis and treatments. AEAL is mainly managed by patients who develop their activities as volunteers offering information and emotional support. Services and activities for patients and relatives are free of charge.

Email :



Steering Committee
Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

Aplastic Anemia & MDS International Foundation

The Aplastic Anemia & MDS International Foundation is the world’s leading non-profit health organization dedicated to supporting patients and their families who are living with aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases.

We are a patient-focused, patient-centered organization serving patients and families throughout the three phases of bone marrow failure diseases:

  • The life-changing phase of diagnosis
  • The life threatening phase of treatment
  • The lifelong phase of living with a chronic disease

The Aplastic Anemia & MDS International Foundation provides answers, support and hope to thousands of patients and their families around the world.

Contact : Kathleen Weis, CEO
Email : weis@aamds.org

www.aamds.org


Steering Committee
Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

Aplastic Anemia and Myelodysplasia Association of Canada

The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a volunteer-run organization supporting patients and caregivers across the country who are living with aplastic anemia, myelodysplastic syndrome (also called MDS or myelodysplasia) and paroxysmal nocturnal hemoglobinuria (PNH).

In addition to supporting patients and caregivers AAMAC also:

  • provides funds for research
  • works to increase awareness
  • provides education
  • advocacy
  • support for blood, bone marrow and stem cell donations

Contact : Cindy Anthony
Email : 4anthony@rogers.com

www.aamac.ca


Patient Services
Patient Meetings
Patient Meetings
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Raising Awareness & Education Activities

Association of citizens for rare diseases life with challenges Bitola

The Association of citizens for rare diseases LIFE WITH CHALLENGES is formed and lead by patients and families facing rare diseases. As a patient organization we advocate for patients rights, we provide information on diseases, we translate information, we connect patients and families with other patients and families with the same rare disease, we organize patient gatherings, we organize educative lectures for medical professionals, we have many activities for raising public awareness, we also have capacity building activities, activities for networking and communication with stakeholders and other activities depending on the needs of the patients and families facing rare diseases.

Здружението на граѓани за ретки болести ЖИВОТ СО ПРЕДИЗВИЦИ е формирано и водено од пациенти и семејства кои се соочуваат со ретки болести. Како организација на пациенти се застапуваме за правата на пациентите, понатаму споделуваме информации за болести, едукативни материјали, преведуваме информации на бараање на пациентите, ги спојуваме пациентите и семејствата со други кои се соочуваат со истата болести, организираме собири на пациенти, едукативни предавања за здравствени работиници, имаме многу активности за подигнување на јавната свест, активности за градење на капацитет на организацијата, активности за вмрежување и комуникација и слично зависно од потребите на пациентите и семејствата кои се соочуваат со ретки болести.

Contact : Vesna Aleksovska
Email : zivotsopredizvici@gmail.com

challenges.mk


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

Associazione Italiana Pazienti con Sindrome Mielodisplastica (AIPaSiM)

AIPaSiM is a patient-governed society supporting patients with MDS in Italy
Our mission is :

  • to be a source of disease and treatment-related knowledge for patients and their caregivers
  • to be a platform to connect patients and family members (also by organizing local and national meetings)
  • to connect patients to experts clinicians and improving doctor-patient dialogue
  • to represent patient perspective in debate with other stakeholders within the national healthcare system

Fax number +39 0287152199

Contact : Paolo Pasini
Email : info@aipasim.org

aipasim.org


Patient Services
Patient Meetings
Reuniones de Pacientes
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Representación en Congresos

Cancer Support Community of Kosovo

Our goals

Don’t suffer in silence – Help us help you. Formed in March 2018, at CSCK we aim to raise awareness of cancer and offer support and information to patients, families and healthcare professionals across Kosovo. We campaign to increase the quality of life and make treatments available to those affected by the condition. Our interests are blood cancers and particularly myelodysplastic syndromes. Using our networks and national and international collaborations we aim to be the biggest cancer support platform in Kosovo by 2020.

How we do it?

If you live in Kosovo and are suffering from cancer then you’ve come to the right place. We will do the following:

  • Put you in touch with fellow patients who may share their experience with you.
  • Provide you with access to a list of consultants, specializing in your condition in Kosovo and nearby countries.
  • Provide you with help and advice.
  • Help you receive the most up to date information on your condition, patient stories and current research

Contact : Blerina Ahmetaj-Shala
Email : info@csckosovo.com

csckosovo.com


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

CONNAÎTRE ET COMBATTRE LES MYÉLODYSPLASIES

L’association Connaître et Combattre les Myélodysplasies regroupe, depuis juillet 2006, des personnes atteintes de syndrome myélodysplasique et leurs proches.
L’association a l’appui du Groupe Francophone des Myélodysplasies (GFM).

Objectifs sont:

  1. Favoriser les échanges d’information entre les patients et leurs proches à une échelle nationale et régionale.
  2. Favoriser la recherche sur les myélodysplasies et la mise en place de nouveaux médicaments et traitements, en liaison avec les médecins du GFM.
  3. Contribuer au progrès des soins et de la prise en charge des patients.
  4. Faciliter la relation des adhérents avec les spécialistes des myélodysplasies. Soutenir l’action du Groupe Francophone des Myélodysplasies (GFM) et collaborer avec lui.
  5. Maintenir une veille sur les progrès obtenus dans le monde et organiser des réunions d’information en présence de spécialistes.

Since July 2006, our association has been supporting people suffering from Myelodysplastic Syndrome and their relatives with the help of the Francophone Group of Myelodysplasia (GFM).

Our objectives are:

  1. Encourage the exchange of information between patients and their families at a national and regional level.
  2. Promote research on MDS and the introduction of new drugs and treatments, in collaboration with GFM doctors.
  3. Contributing to the advancement of patient treatment and care.
  4. Facilitate the relationship of its members with MDS specialists. Support and collaborate with the Francophone Group of Myelodysplasia (GFM).
  5. Keep up-to-date with the latest progress achieved around the world and organize informational meetings for patients with the presence of MDS specialists.

Contact : Sarah Jenny
Email : associationccm@yahoo.fr

www.myelodysplasies.org


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

Croatian Leukemia and Lymphoma Society

The association aims at assisting patients with hematological diseases and developing new research programs and treatment methods.

For this purpose it undertakes the following activities:

  • It organizes the treatment of patients suffering from leukemia, lymphoma, MDS and other blood malignancies.
  • It collects donations and runs programs to help patients.
  • It promotes new treatment methods, and provides professional and financial assistance to these programs.
  • It supports programs to help patients and their families.
  • It supports research work in the field of etiology, therapy and treatment of haematological malignancies.
  • It develops bone marrow transplant programs in the Republic of Croatia.
  • It organizes seminars and conferences and distributes information to health and research institutions.
Dražen Vincek - President

Contact : Dražen Vincek
Email : udruga.hull.zagreb@gmail.com

www.hull.hr


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses

DIAGNOZA LEUKEMIE, z. s.

DIAGNOZA LEUKEMIE, z.s. is a patient-governed society supporting patients with leukemias and
blood malignancies and their family in the Czech Republic. Evolving from a chronic myeloid
leukemia support organisation – Diagnoza CML (2006-2014) and expanding its activities while
following its mission:

  • source of disease and treatment-related knowledge for patients and their caregivers
  • platform for patients’and family members’ socialising (Regional meetings)
  • connecting patients to experts and improving doctor-patient dialogue
  • improving patients’ legal empowerment
  • representing patients’ perspective in debate with other stakeholders within the healthcare
    system
  • activities at international level

DIAGNOZA LEUKEMIE, z.s. je pacienty řízený spolek na pomoc pacientům s leukemiemi a
zhoubným onemocněním krvetvorby a jejich rodinným příslušníkům v roli pečovatelů, působící v
České republice. Původní organizace podporující pacienty s chronickou myeloidní leukemií
(Diagnóza CML, 2006-2014) rozšířila svoji činnost při zachování své mise:

  • jakožto zdroje informací o onemocnění pro pacienty a jejich příbuzné v roli pečovatelů
  • poskytování příležitostí k vzájemné výměně zkušeností mezi pacienty (Regionální setkání)
  • napojení na odborníky a zlepšování dialogu lékař-pacient
  • zlešování právního povědomí pacientů
  • hájení zájmu pacientů v debatě se všemi zainteresovanými stranami v oblasti zdravotnictví
  • činnost na mezinárodním poli

Contact : Jana Pelouchova
Email : janapel@centrum.cz

www.diagnoza-leukemie.cz


Patient Services
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs

HematologickyPacient – Association of Patients with Hematological Maligancies

Our mission is to actively represent and promote the interests of patients in the exercise of their right to health care, leading to prolonging life and improving its quality.

We listen to patients, find answers to their questions, and help them get the best possible treatment.

We work with top Slovak hematologists and monitor current scientific work on the treatment and research of hematological diseases. All important news about haematological malignancies can be found on our website and in the information materials.

Our helpline supports patients to keep with their treatment regimen. We provide with the information and support them to get the medication right.

We provide patients with legal advice. Our website provides practical advice and guidance on how to address the financial and social difficulties caused by the illness.

We help patients to get the right treatment – on our website and in our information materials, they find detailed information on the different options for treating their disease as well as on whether this treatment is covered by health insurance companies and under what conditions.

We also put together the medical and legal arguments and represent individuals who need treatment that is not covered by their health insurance. We turn to a health insurance company and look for other solutions to mediate the treatment on behalf of patients.

Contact : Katarina Fedorova
Email : katarina1.fedorova@gmail.com

www.hematologickypacient.sk/sk/


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs

Hematon Foundation

Hematon is a patient advocacy group for patients with blood cancers, including MDS, lymphomas and stem cell transplantion and their caregivers. We provide information about the diseases (website, magazine, booklets, meetings with hematologists), offer peer support (face-to-face, by telephone, by e-mail, forum) and we are advocates for better care, access to all available medicines, reimbursment of medical costs, and we promote patient empowerment.
Hematon is an organisation of volunteers (patients and caregivers).

Hematon is de patiëntenorganisatie voor patiënten met een hematologische-oncologische aandoening en/of mensen die een stamceltransplantatie hebben ondergaan. Ons doel is hen te ondersteunen bij alle aspecten die het leven met en na kanker met zich meebrengt. We zijn er ook voor naasten en donoren van patiënten. Lotgenotencontact, belangenbehartiging en informatievoorziening zijn onze speerpunten. Hematon bundelt kennis en ervaring. De organisatie bestaat dan ook voornamelijk uit betrokken en (ervarings-)deskundige vrijwilligers.

Hematon komt tegemoet aan drie behoeften bij patiënten: weten, delen en ontmoeten. We maken het mogelijk dat patiënten kennis en ervaringen kunnen delen met elkaar en met deskundigen en zorgen voor ontmoetingen tussen patiënten. We geven daar op verschillende manieren invulling aan.

Contact : Jan Boonstra
Email : secretariaat@hematon.nl

www.hematon.nl


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses

Japan MDS patient support group (JAMPS)

Japan MDS (Myelodysplastic syndrome) Patient Support Group was established with the support of MDS patients’ families and their carers, and the International MDS Foundation with the aim of support patients and families affected by Myelodysplastic Syndrome.

Japan MDS Patient Support Group has an international information network as part of the Global Patient Support Groups of the International MDS Foundation.

We provide information related to MDS, introduce patients to the MDS Center of Excellence – certified by the International MDS Foundation – and provide support for doctors, nurses, pharmacists and patients. We also spread the latest research and new treatment options and provide information of current clinical trials.

Contact : Yumi Yamamoto / Eri Kashiwagi
Email : yamamoto@mdssupport.net / yamamoto@MRCJAPAN.com

http://www.mdssupport.net/index.html


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

Korea Blood Cancer Association

We will work hard to give blood diseases and cancer patients a better environment.

The crisis of losing one’s health can come without warning. It brings pain, despair and misery to our lives.
However, there is no crisis that cannot be overcome.

Today, with the development of new medicines, the rate of cure and the quality of life of blood cancer patients is getting higher and higher. Therefore, sharing the experiences of patients with the same disease brings seeds of hopes for blood cancer patients and their families.

The Korean Society of Blood and Cancer is a non-profit organization that helps patients to cope with the disease through economic and emotional support and work on a variety of disease education programs to help people understand the disease and make their life better. We make periodical publications and distribute them free of charge. We take part in international organizations and conferences in the USA, Japan, Europe, etc. looking at keeping up-to-date and provide better support programs.

Contact : Executive Director Chul Hwan Lee of KBCA
Email : bloodcancer@daum.net

www.bloodcancer.or.kr


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

Leukaemia & Blood Cancer New Zealand

Since 1977, our work has been made possible through our fundraising events and the generous support we receive from individuals, companies, trusts and grants. We do not receive government funding.

Funding goes to our core services: Patient Support, Research, Information, Awareness & Advocacy

We aim to provide support where and when it is needed most. Our free and personalised services range from just having someone to talk to in our Support Services team, to disease-specific information and resources.

The suddenness with which these diseases strike can often put enormous financial strain on people. To those experiencing difficulties we may be able to offer support including food or petrol vouchers, or help with paying utility bills. Each case is assessed on an individual basis.

LBC is committed to finding better treatments and cures. We are the only dedicated funder of haematology research in New Zealand. Annually, we provide travel grants to health professionals, including scientists, clinicians, nurses and laboratory staff to attend local and international meetings, keep up to date with the latest advancements and conduct vital research.

Contact : Pru Etcheverry
Email : pru.etcheverry@leukaemia.org.nz

www.leukaemia.org.nz/


Steering Committee
Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Policy Meetings, Advocacy

LHRM-MDS Patienten-Interessen Gemeinschaft

It is our aim to help MDS-patients and their families to advocate themselves. What we want is to provide information on the disease, support patients to find MDS-specialists across Germany and to gain influence in health-related committees.

We offer networking service especially for newly diagnosed patients, who would like to share their experience with fellow sufferers. You can contact us by telephone line or participate in our Blog. We wish to raise awareness of MDS to patients, carers and health care professionals across Germany.

We do that through organizing patient information days, through our website www.mds-patienten-ig.org and through printed material. On behalf of the MDS-community we equally work on European and international basis by regular, active attendance at specialist hematological congresses and by collaboration with MDS-related patient organizations as well as working-groups such as MDS-Alliance

Die MDS Patienten-Interessen Gemeinschaft, Deutschland ist eine Untergruppe der Leukaemiehilfe RHEIN-MAIN e.V.

Es ist unser Ziel MDS-Patienten und deren Angehörige so zu unterstützen, dass sie in der Lage sind ihre Interessen zu vertreten. Wir möchten über die Erkrankung informieren, die Patienten unterstützen deutschlandweit Kontakt zu den entsprechenden MDS-Spezialisten zu knüpfen und unseren Einfluss in wichtigen gesundheitspolitischen Gremien geltend machen. – Wir bieten ein Netzwerk, vor allem für neu diagnostizierte Patienten, die einen Erfahrungsaustausch mit anderen Patienten aufbauen möchten. Sie können uns über Telefon oder über Internet erreichen oder an unserem neu eingerichteten Blog teilnehmen. – Unsere Zielsetzung ist es deutschlandweit den Bekanntheitsgrad der MDS-Erkrankung unter Patienten, Angehörigen, Ärzten und medizinischem Personal zu erhöhen. Um das zu erfüllen, veranstalten wir regelmäßig Patienten- und Angehörigen Tage in verschiedenen Städten Deutschlands, pflegen unsere gut besuchte Webseite www.mds-patienten-ig.org und veröffentlichen Broschüren zu MDS. Für unsere MDS-Patienten arbeiten wir ebenfalls auf europäischer und internationaler Ebene,
indem wir regelmäßig hämatologische Fachkongresse zur Fortbildung und zu Vernetzungszwecken besuchen und dort auch unser Materialien ausstellen. Wir vernetzen uns mit anderen Patientenorganisationen und internationalen Arbeitsgruppen wie MDS Alliance.

Bergit Khule - MDS Alliance Steering Committee Member
Anita Waldman - LHRM Chairman

Contact : Bergit Kuhle: LHRM Office - Steering Committee Member
Email : b.kuhle@t-online.de / buero@LHRM.de

www.mds-patienten-ig.org


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses

Linfomas Argentina

Linfomas Argentina es una asociación civil sin fines de lucro de pacientes y familiares de pacientes con linfoma, mielofibrosis y síndromes mielodisplásicos en la Argentina.

Qué servicios brindamos:

  • Contención y orientación a pacientes y familiares, brindándoles información, respondiendo consultas y orientándolos acerca de los diferentes tipos de linfoma.
  • Orientación e información general acerca de los tratamientos disponibles, siempre incentivando y haciendo hincapié en la consulta al médico personal.
  • Realización de conferencias, charlas y eventos informativos para pacientes, familiares y profesionales del área de la salud, buscando valorizar y humanizar la relación médico-paciente para hacer más llevaderos los tratamientos.
  • Organización de encuentros y reuniones para pacientes y familiares.
  • Organización de campañas nacionales de concientización acerca de los linfomas
  • Intercambio de experiencias e información con otras asociaciones de pacientes de modo de potenciar y aunar esfuerzos y ampliar las redes de divulgación de información para llegar a la mayor cantidad de gente posible
  • Participación en eventos médicos
  • Elaboración y distribución de material didáctico e informativo acerca de los linfomas de fácil comprensión.
  • Asesoramiento y guía a pacientes y familiares para que los mismos puedan tener acceso a los tratamientos disponibles.

Lymphomas Argentina is a non-profit civil association of patients and relatives of patients with lymphoma, myelofibrosis and myelodysplastic syndromes in Argentina.

What services we provide:

  • Containment and guidance to patients and relatives, providing information, answering questions and guiding them about the different types of lymphoma.
  • Guidance and general information about available treatments, always encouraging and emphasizing consultation with the personal physician.
  • Conducting conferences, lectures and informative events for patients, family members and professionals in the health area, seeking to enhance and humanize the doctor-patient relationship to make treatments more bearable.
  • Organization of meetings and meetings for patients and relatives.
  • Organization of national awareness campaigns about lymphomas
  • Exchange of experiences and information with other patient associations in order to strengthen and join forces and expand information dissemination networks to reach as many people as possible
  • Participation in medical events
  • Preparation and distribution of educational and informative material about easy-to-understand lymphomas.
  • Advice and guidance to patients and family members so they can have access to the available treatments

Contact : Haydee Gonzalez
Email : hgonzalez@linfomasargentina.org

www.linfomasargentina.org/home.php


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

LyLe – Patientassosiation for Lymphoma, Leukaemia and MDS (Denmark)

LyLe’s story
We started at an information meeting in April 2007, where we asked the attendees about their expectations for a patient association. LyLe’s purpose and association’s work is based on the dialogue at the meeting.

We work on 3 main areas: Dialogue with others, information and impact on systems.

Dialogue with others
LyLe facilitates contact between patients with the same disease, shortly after diagnosis, during the course of treatment or after treatment.
We also promote dialogue between the relatives and with professionals.

Information
We produce information about the disease, via booklets, and promote their distribution after the consultation, so that patients can keep it.
Through our website we provide updated links to find more information about the diseases.

Advocacy
We strive to have an impact in the health system, through our political campaigning and our direct dialogue with the health service with the aim of representing patients and their needs.

Contact : Rita Christensen or Niels Jensen (for MDS)
Email : rita@lyle.dk / Niels@lyle.dk

www.lyle.dk


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

Magyar Onkohematológiai Betegekért Alapítvány (MOHA) – Foundation for Hungarian Oncohaematological Patients

MOHA has been established to help provide trustworthy information for people with hematopoietic illnesses, provide emotional support and represent patients’ interests with decision-makers.

INFORMATION
We produce patient information leaflets and organize large-scale educational programs several times a year, as well as specific diseases support groups, where patients get the opportunity to consult expert professionals. Our goal is to strengthen trust in evidence-based medicine and to promote scientific thinking.

PSYCHOSOCIAL SUPPORT
Our aim – beyond the dissemination of knowledge – is to provide emotional support for patients and their families going through similar situations. Within the groups, it is possible to meet with patients and carers whose example can help to cope successfully with the disease. Honest conversations can relieve anxiety due to illness and treatments. In parallel, we run virtual groups on social network sites where patients can communicate on a daily basis. These are all moderated by professionals.

ADVOCACY
The purpose of MOHA is to give patients access to the most up-to-date treatment recommended for their illness, in a predictable and transparent manner, and at the right time. While some patients are less able to act effectively to protect their interests, we can achieve success with civil pressure. As patient representatives we are working to get involved in all patient-related decision-making processes.
New therapies are constantly emerging, which give patients more chance to heal. It is important for those concerned to know about new opportunities and consult their doctor.

Contact : Ibolya Kéri
Email : moha@onkohemat.hu

www.onkohemat.hu/


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses

MDS Contactgroup

Wij bieden ondersteuning aan patiënten, de partner en hun omgeving via
– informatieve bijeenkomsten,
– persoonlijk- en telefonisch contact,
– ontmoetings- en ontspanningsactiviteiten,
– een tweejaarlijkse infodag.

We provide support to patients, their partners and their environment through:
– informative meetings,
– personal and telephone contact,
– meeting and relaxation activities,
– a biennial info day.

Contact : Luc Verbeugt
Email : info@mdscontactgroep.be

www.mdscontactgroep.be


Steering Committee
Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

MDS Foundation, Inc.

The MDS Foundation, Inc. is an international organization established in 1994 by world renowned researchers dedicated to further scientific knowledge, patient support, and education in the myelodysplastic syndromes (MDS).

The Foundation is based on the premise that international cooperation will accelerate the process leading to the control and cure of MDS. The Foundation provides research grants for scientific investigators, sponsors international working groups of scientists and physicians to further diagnostic, prognostic and treatment techniques, and disseminates information on state of the art research, clinical trials and treatments among the profesional and patient communities.

The Foundation also refers patients to its collection of ‘MDS Centers of Excellence,’ maintains an electronic fórum on its website for interaction and Support among patients, and provides educational programs for both health care professionals and patients and their families.

Contact : Tracey Iraca, Executive Director
Email : tiraca@mds-foundation.org

www.mds-foundation.org


Steering Committee
Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

MDS UK Patient Support Group

We are the only group dedicated solely to MDS in the UK.
“Support, Information, Awareness and Campaigns for those affected by Myelodysplastic Syndromes”.

The majority of our committee members are either MDS patients themselves or relatives of a patient.

We were formally set up in 2008 and have two full-time employees as well as a part-time volunteer.

We are funded by donations, fundraisers and pharmaceutical grants.

We are delighted to cooperate with other MDS groups anywhere in the world – and look forward to meeting any new members to share best practices.

Our aims are:

  • To provide a networking service through which those newly diagnosed with MDS can share their experience with fellow sufferers.
  • To provide a help and advice telephone line 5 days a week.
  • To organise several national patient information meetings with specialist speakers.
  • To help patients create small regional support group meetings, to meet informally – or organise activities or small presentations.
  • To distribute information and raise awareness of MDS among patients, carers and health care professionals across the UK.
  • To provide access to a list of UK consultants, specialising in MDS.
  • To develop and maintain a website, providing information on MDS, latest news or research and clinical trials and a very active Patients Forum.
  • To run two Facebook pages (one public, one per invitation only) and a Twitter account.

Contact : Sophie Wintrich
Email : swintrich@mds-foundation.org

www.mdspatientsupport.org.uk


Patient Services
Patient Meetings
Patient Meetings
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

Portuguese Association against Leukemia and other hemato oncological diseases

APCL’s mission is to contribute, at a national level, to increase the effectiveness of the treatment of Leukemias and other related hematological malignancies.

Our main objectives are:

  • Maintenance and development of the Register of Bone Marrow Voluntary Donors in Portugal – CEDACE (National Center for Bone Marrow, Stem Cell, or Cord Blood Cell Donors)
  • Promoting the advancement of scientific knowledge on the nature, evolution, prevention and treatment of these diseases
  • Supporting scientific research with a Scholarship award program and investing in Advanced Training for health professionals
  • Financial support for patients with Leukemia and their families

Contact : Carlos Horta e Costa
Email : chc@apcl.pt

www.apcl.pt


Steering Committee
Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

Sarah Liptrott – European Institute of Oncology, Milan, Italy

Sarah Liptrott is a Clinical Research Nurse in the Division of Haematology/BMT at the IEO. She graduated from Liverpool University with a Bachelor of Nursing (Hons), and obtained her Masters Degree at Staffordshire University. Throughout her career, Sarah has specialised within oncology, working within surgery and medicine as well as chemotherapy units. In her role as Clinical Nurse Specialist she developed nurse led clinics and implemented nurse prescribing into the haemato-oncology field. She has worked as Clinical Trial Team Leader responsible for the research team and achievement of UK national targets. Sarah has authored or co-authored numerous articles in high-quality scientific journals as well as being an invited reviewer. Her educational developments include BMT training/chemotherapy/clinical trials in both UK and European settings. She has served on many committees including the European Group for Blood and Marrow Transplantation Nurses Group Research Sub Committee and is a member of the RCN – Cancer Forum and Haematology & BMT Forums.

Contact : Sarah Liptrott
Email : sarah.liptrott@ieo.it

https://www.ieo.it/en/


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Newsletter, Web-forum, Advocacy, Awareness

Slovenian lymphoma and leukemia patient association, L&L

The Slovenian Association of Patients with Lymphoma and Leukemia, L & L, was founded on May 15, 2007.

OUR OBJECTIVES:

  • Informing and raising public awareness of lymphomas, leukemia and other blood diseases,
  • The quest for the early detection of lymphomas, leukemia and other blood diseases, and the best diagnostic treatment and treatment of patients,
  • The pursuit of comprehensive care for patients during and after treatment,
  • Informing and assisting patients and their relatives during treatment,
  • Care for patients to understand the proposed methods of treatment and to participate in clinical trials at home and abroad,
  • Raising awareness of their rights in the field of health and social care and education,
  • Advocating for a correct and human attitude towards the patient by all the participating institutions in the process of healing, rehabilitation and return to the working, social and educational environment,
  • Raising awareness of the importance of donation of blood-forming stem cells,
  • Promoting the spread of the Slovenian register of blood donor stem cell donors,
  • Organization of professional lectures, conferences and congresses for patients and relatives in the field of health and a healthy lifestyle, organization of workshops, sports and cultural events, etc.,
  • Promoting a healthy lifestyle
  • Developing and organizing self-help and volunteering.

Contact : Kristina Modic
Email : modic.kristina@gmail.com

www.limfom-levkemija.org/domov.html


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses
Other
Other

Suomen Syöpäpotilaat ry – Association of Cancer Patients in Finland

The Association of Cancer Patients in Finland

The Association of Cancer Patients in Finland is a non-governmental organisation founded in 1971. The Association supports cancer patients and provides information about cancer. It is a member organisation of the Cancer Society of Finland and has a long tradition in patient advocacy and provides a general patient helpline and a chat/email service.

The Association coordinates 20 patient networks, including a network for MDS patients, which offer peer support to cancer patients and their families. Some of the association’s concrete work includes producing and distributing information booklets and videos, advocating for best possible treatment for cancer patients, arranging events for patient networks and managing Facebook groups dedicated to the different networks.

Suomen Syöpäpotilaat ry

Suomen Syöpäpotilaat ry (SSP) on valtakunnallinen syöpäpotilaiden etujärjestö, jonka tavoitteena on parantaa syöpäpotilaiden ja heidän läheistensä elämänlaatua. Yhdistys on Suomen Syöpäyhdistyksen jäsen ja osa Syöpäjärjestöjä.

Yhdistys tuottaa luotettavaa tietoa syöpäsairauksista sekä niiden hoidosta ja ylläpitää kattavaa valikoimaa potilasoppaita. SSP koordinoi yhteensä 20 Facebookissa toimivaa syöpäkohtaista potilasverkostoa, joista yksi on suunnattu MDS-potilaille ja heidän läheisilleen. Potilasverkostot tarjoavat mahdollisuuden monimuotoiseen vertaistukeen. Yhdistys ajaa syöpäpotilaiden etuja, järjestää potilastapahtumia sekä jakaa tietoa syöpäsairauksiin ja niiden hoitoon liittyen.

Contact : Helena Hurme, Mirjami Tran Minh, Minna Anttonen
Email : mirjami.tranminh@syopapotilaat.fi

www.syopapotilaat.fi


Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Attendance at Congresses
Attendance at Congresses
Other
Website, Multi-center Clinical Trials

TAMID – The Israeli Association for Myelodisplastic Syndrome

The founders of TAMID are patients, family members and leading haematologists from several medical institutions in Israel, all volunteering to pursue the vision of improving MDS patients’ quality of life.

We support MDS patients and their families by:

  • Providing approachable information, intended for those without a medical background.
  • Enabling personal support to patients and their families, on a voluntary basis, within the community.
  • Developing and promoting the awareness to the disease within the public and the medical teams.
  • Funding revolutionary medical treatments which are currently inaccessible to patients, including new treatments as well as protocols used for other haematological diseases that are believed to be effective in MDS, and create a pedestal for the discussion about the inclusion of these treatments in the public health insurance.

We are committed to promote and enhance the collaboration between various medical institutions, to enable access to international trials and promote and implement cutting-edge treatments.

עמותת ת.מ.י.ד – תסמונת מיאלודיספלסטית
מקימי האירגון, כולם מתנדבים, התקבצו לעשייה משותפת לקידום ענינם, רווחתם ואיכות חייהם של חולי תסמונת מיאלודיספלסטית ובני משפחותיהם
מטרת חברי האירגון היא לתמוך בחולים ובני משפחותיהם, באמצעות
הנגשת מידע נוח, המיועד לאנשים שאינם מומחים במקצועות הרפואה
תמיכה אישית בחולים ובני משפחותיהם, על בסיס התנדבותי, במסגרת הקהילה
פיתוח וקידום המודעות למחלה בקרב הציבור וצוותי רפואה מקצועיים בקהילה
מימון לצורך פתיחת האפשרות לטיפולים באמצעות תרופות חדשות, או יישום טיפולים תרופתיים ממחלות אחרות לצורך הטיפול במחלה והכללת טיפולים אלו בסל התרופות. האירגון יפעל לקידום שיתוף הפעולה בין המרכזים הרפואיים בישראל, על מנת לקדם את מקומה של הקהילה הרפואית
המקצועית הישראלית, ובכך לאפשר קידום וחשיפה ליבוא ויישום של טיפולים חדשים ופורצי דרך עבור החולים

Contact : Iris Yahal
Email : office@mds.org.il

www.mds.org.il
Leukaemia Foundation Logo

Patient Services
Patient Meetings
Patient Meetings
Patient Telephone Helpline
Patient Telephone Helpline
Information Packs
Information Packs
Attendance at Congresses
Attendance at Congresses

The Leukaemia Foundation (Australia)

The Leukaemia Foundation is the only Australian charity helping those with leukaemia, lymphoma, myeloma, MDS and related blood disorders survive and live a better quality of life.

Each day, another 35 Australians are diagnosed. Although improved treatments and care are helping more people survive, sadly someone loses their life to blood cancer every two hours. Blood cancer is the third most common cause of cancer death in Australia, claiming more lives than breast cancer or melanoma.

Helping local families beat blood cancer

Each year, the Leukaemia Foundation helps hundreds of families from regional and rural Australia by providing free accommodation in our capital cities so they can access life-saving treatment at major hospitals. Our transport service also helps thousands get to and from medical appointments, driving more than one million kilometres each year to ensure people get the medicines they need to beat their blood cancer. Thanks to its supporters, the Leukaemia Foundation is also able to provide counselling, comprehensive information, education and support programs and financial assistance to help the 60,000 Australians who are currently living with a blood cancer.

Helping Australian researchers beat blood cancer

Researchers funded by generous supporters of the Leukaemia Foundation are working tirelessly to discover safer and more effective treatments that will save lives and help people lead a better quality
of life. Our $38m cancer research program has been running for more than a decade and finds the causes of blood cancer and improves the way people are diagnosed and then treated. The Leukaemia Foundation gives those impacted by blood cancer a strong voice, advocating for change and ensuring all Australians who need them have easy access to the very best blood cancer treatments.

Email : info@leukaemia.org.au

www.leukaemia.org.au


Patient Services
Patient Meetings
Patient Meetings
Information Packs
Information Packs
Other
Blood Donation Campaigns

The Public Organization For Patients with Hematological Diseases

Our goal

To help patients with hematological diseases, including: protecting the rights and legitimate interests of hematological patients, obtaining medical, information, psychological, social, financial, legal and other types of assistance.

Our activities

  • Focusing attention of federal and regional authorities and the public on the problems of patients with hematological diseases;
  • Assistance to patients with hematological diseases in obtaining timely medical assistance and the necessary drug provision guaranteed to be financed by government agencies;
  • Information activities related to problems and achievements in the field of hematology: organizing and holding conferences, round tables, seminars, patient schools, consultations;
  • Informing patients with hematological diseases on issues related to the disease of hematological patients and protection of their rights and legitimate interests: publishing paid and unpaid basis brochures, books, booklets, bulletins, reports, newspapers, magazines and other printed materials, filming and distributing video materials. Distributing information materials through your own site and partner sites.
  • Organization of volunteer movement in order to provide feasible assistance in caring for hematological patients, providing spiritual, psychological and other forms of support;
  • Involvement of philanthropists in Russia and abroad to support hematological patients and targeted use of material and other assistance for the needs of patients.

Contact : Oksana Chirun
Email : Oksana.chirun@gmail.com / info@mm-blood.ru

www.mm-blood.ru/