Our Member Organizations
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Founding Members (Steering Committee)
Europe:

aeal

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.

Natacha Bolanos

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

www.aeal.es

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

Bergit Kuhle


Anita Waldmann

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

www.mds-patienten-ig.org

MDS UK Patient Support Group

MDS UK was formally set-up in 2009. 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.

Sophie Wintrich

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

www.mdspatientsupport.org.uk
North America:

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

Cindy Anthony

Contact : Cindy Anthony, Executive Director
Email : 4anthony@rogers.com

www.aamac.ca

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.

Kathleen Weis

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.

Tracey Iraca

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

www.mds-foundation.org

 

General Members

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

Iris Yahal

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

www.mds.org.il

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

Jana Pelouchova

Contact : Jana Pelouchova
Email : janapel@centrum.cz

www.diagnoza-leukemie.cz

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/

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).

Contact : Jan Boonstra
Email : jan.de.jong@hematon.nl

www.hematon.nl

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

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.

Patrick Festy

Contact : Sarah Jenny
Email : associationccm@yahoo.fr

www.myelodysplasies.org

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.

Luc Verbeurgt

Contact : Luc Verbeugt
Country : Belgium
Email : info@mdscontactgroep.be
Language : Dutch

www.mdscontactgroep.be

Abrale

Merula Steagall

Contact : Merula Steagall
Country : Brazil
Email : merula@abrale.org.br
Language : Portuguese

www.abrale.org.br

Croatian Leukemia and Lymphoma Society

Contact : Ivana Cvijetic
Country : Croatia
Email : icvijetic.hull@gmail.com
Language : Croatian

www.hull.hr

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.

Vesna Aleksovska

Contact : Vesna Aleksovska
Country : Macedonia
Email : zivotsopredizvici@gmail.com
Language : Macedonian

challenges.mk

Portuguese Association against Leukemia and other hemato oncological diseases

Sophia Sa Cardoso

Contact : Sofia Sa Cardoso
Country : Portugal
Email : sofiasacardoso@apcl.pt
Language : Portuguese

www.apcl.pt

Slovenian lymphoma and leukemia patient association, L&L

Kristina Modic

Contact : Kristina Modic
Country : Slovenia
Email : modic.kristina@gmail.com
Language : Slovenian

www.limfom-levkemija.org/domov.html