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.

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

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

www.mds-patienten-ig.org
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

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.

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 : Susan Hogan, Operating Director
Email : shogan@mds-foundation.org

www.mds-foundation.org

 

General Members

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

The Leukaemia Foundation of Australia

Contact : Anthony Steele, National MDS Coordinator
Email : asteele@leukaemia.org.au

www.leukaemia.org.au

MDS Contactgroup

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

www.mdscontactgroep.be/welkom.html

Abrale

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

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

challenges.mk


HematologickyPacient – Association of Patients with Hematological Maligancies

Country : Slovakia

Language : Slovak