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
Country : Spain
Email : email@example.com
Language : Spanish
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-Alliancewww.mds-patienten-ig.org
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:
Contact : Cindy Anthony, Executive Director
Country : Canada
Email : firstname.lastname@example.org
Language : English, French Canadian
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 Aplastic Anemia & MDS International Foundation provides answers, support and hope to thousands of patients and their families around the world.
Contact : Kathleen Weis, CEO
Country : United States
Email : email@example.com
Language : English
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
Country : United States
Email : firstname.lastname@example.org
Language : English
Contact : Ibolya Kéri
Country : Hungary
Email : email@example.com
Language : Hungarian
Contact : Oksana Chirun
Country : Russia
Email : Oksana.firstname.lastname@example.org
Language : Russian
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
Country : Netherlands
Email : email@example.com
Language : Dutch
Contact : Vesna Aleksovska
Country : Macedonia
Email : firstname.lastname@example.org
Language : Macedonian
Contact : Sofia Sa Cardoso
Country : Portugal
Email : email@example.com
Language : Portuguese
Contact : Kristina Modic
Country : Slovenia
Email : firstname.lastname@example.org
Language : Slovenian