Information For

Patients & Carers

Resources

Our member organizations offer a variety of online resources, print resources, newsletters, mobile apps, and more!

learn more

News & Events

Learn about upcoming events in your area, read the latest news on MDS, and join our email list.

learn more

World Awareness Day

25th of October is MDS World Awareness Day. View photos from groups around the world to learn how we are spreading awareness together.

learn more

Find Your Local Alliance Member

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

Filter Members by Country


Argentina
Australia
Belgium

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
Brazil

Abrale

Contact : Merula Steagall
Email : merula@abrale.org.br

www.abrale.org.br
Canada

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, Executive Director
Email : 4anthony@rogers.com

www.aamac.ca
Croatia
Czech Republic

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
Denmark

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

Rita Christensen


Niels Jensen

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

www.lyle.dk
France

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
Germany

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 Kuhle


Anita Waldmann

Contact : Bergit Kuhle / LHRM-office
Email : b.kuhle@t-online.de / buero@LHRM.de

www.mds-patienten-ig.org
Hungary
Israel

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
Italy

Associazione Malattie del Sangue (Ams) Onlus

Associazione Malattie del Sangue (Ams) Onlus è nata nel 1998 con lo scopo di migliorare le possibilità di cura e la qualità di vita delle persone affette da leucemie, linfomi, mielomi, anemie e malattie della coagulazione. Le attività dell’Associazione puntano all’eccellenza nei trattamenti farmacologici, nell’assistenza al paziente e nella ricerca clinica e biologica.
In particolare Ams Onlus supporta i pazienti dell’Ematologia dell’ASST Grande Ospedale Metropolitano Niguarda di Milano mettendo a loro disposizione le figure professionali e le attrezzature strumentali e scientifiche necessarie a promuovere l’eccellenza assistenziale, il progresso della ricerca, la costante formazione del personale sanitario e la necessaria informazione per le persone e le famiglie che si trovano ad affrontare una patologia ematologica.
L’attenzione, la capacità d’ascolto e la comprensione nel rapporto medico-paziente sono le parole d’ordine con cui l’Associazione intende affermare ogni giorno, insieme al diritto alla salute, la dignità e il rispetto della persona umana.

The Association of Blood Diseases Onlus was born in 1998 with the aim of improving the care and quality of life of people suffering from leukaemia, lymphoma, myeloma, anemia and clotting diseases. The Association’s activities focus on excellence in pharmacological treatments, patient care, and clinical and biological research.
In particular, Ams Onlus supports the patients of the ASST Metropolitan Niguarda Hospital in Milan by providing them with the professional information and the scientific equipment necessary to promote welfare excellence, the progress of MDS research, the constant training of healthcare staff and the necessary information for people and families who are facing an haematological disease.
We aim at listening and understanding patients, while nurturing a doctor-to-patient relationship, along with ensuring the right to health, dignity and respect for all human beings.

Contact : Michele Nichelatti
Email : michele.nichelatti@malattiedelsangue.org

www.malattiedelsangue.org/
Macedonia

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
Netherlands

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 : jan.de.jong@hematon.nl

www.hematon.nl
New Zealand
Portugal
Russia
Slovakia
Slovenia
South Korea

Korea Blood Cancer Association

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

www.bloodcancer.or.kr
Spain


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

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.

Contact : Natacha Bolanos
Email : n.bolanos@gepac.es

www.aeal.es
United Kingdom

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
United States

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

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