Who are we?
We are an international umbrella organisation that aims to ensure MDS patients, regardless of where they live, have access to the best multi-professional care.
We aim to provide member organisations, patients and healthcare teams with the resources and the latest information about MDS, including current treatment options, large international projects and events of Interest to the whole community.
We aim to share among our members best practice and skills, and become a forum for advice and guidance on a variety of issues affecting patients, such as cost effectiveness of drugs and treatments, fertility issues and many more.
We would like to campaign together, join forcers to amplify the voice of smaller organisations and help patients and health professionals to establish new patient support groups where they don’t exist.
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Our Steering Committee
Gereon is a former MDS patient. He was diagnosed in 2012. In 2015 he had a stem cell transplant and due to a relapse he had to be transplanted again in 2019.
By profession, Gereon is a software developer and has spent many years developing hospital information systems. However, due to the impact of the two stem cell transplants, Gereon retired from his profession.
association. Since 2021 Gereon is actively working in the board as treasurer. In the LHRM he leads the MDS patient interest group, this is one of the largest supra-regional MDS patient groups in Germany. He also runs groups for patients with AML and stem cell transplantation and their relatives.
Also since 2021, Gereon has served as a member of the Steering Committee of the MDS Alliance.
For some years now, Germany has had The National Center for Tumor Diseases, a research network of university hospitals, with the goal of raising cancer research in all areas to a new level. A key component here is also patient participation. Gereon is a representative on the Patient Advisory Board at the NCT/UCC Dresden and is also a member of the National NCT Patient Research Council.
Cindy Anthony has been the Executive Director of The Aplastic Anemia and Myelodysplasia Association (AAMAC) of Canada since November 2011. Cindy has worked in the Not for Profit Sector for over 20 years and prior to AAMAC her work has been with organizations focussed on Health and Community Development.
Cindy is a founding member of the MDS Alliance (MDSA) and currently serves on the Steering Committee. In addition to her role with the MDSA, Cindy represents AAMAC on a number of committees with organizations dealing with bone marrow and blood disorders in Canada.
Jacqueline Dubow is an MDS patient. From 2018 to 2021, she was the Vice President of «Connaître et Combattre les Myélodisplasies» (CCM), the sole MDS patient association in France. She was also a member of the MDS Alliance (MDSA) steering Committee. Since April 2022, she is the Chair of the MDSA. The MDSA is an international umbrella regrouping 42 MDS patients associations worldwide. Jacqueline is also a representative within the European Patient Advocacy Groups (ePAGs) that brings together 300+ patient representatives from 28 European countries. The ePAGs represent the patient voice in the European Reference Networks (ERNs).
For 40 years, Jacqueline worked in International Developmen. She held senior position with the World Bank Group in Washington, DC. She has advised governments and companies on both operational and strategic matters, principally in the health, education, new technologies and transport sectors.
Prior working at the World Bank, she designed HIV/AIDS prevention communication strategies in Africa for the World Health Organization and managed a worldwide HIV/AIDS communication and behavioral change program for Family Health International, a U.S. non-profit organization.
Ms. Dubow received a Master of Sciences in mass communications from Boston University and two diplomas from the J.F.K. School at Harvard University. Previously, she completed a Master of Education and a Master of the Arts, at the University of Aix-en-Provence in France. She is a dual national, US and France, speaks fluent French, English, and Creole, and is proficient in German and Greek.
Tracey joined the MDS Foundation in 2004 as a part-time Patient Coordinator, assisting with patient education programs. As Executive Director, Tracey now oversees all daily business activities, including finances, staffing, and projects to support the mission of MDSF. She works with the MDSF Board of Directors on strategic planning for meeting the ongoing needs of MDS patients and healthcare professionals. Tracey manages the corporate grants program and is responsible for all corporate relations, organizational partnerships, and new business development.
Blerina is the director of the ‘Blood Cancer Support Community of Kosovo’, which she founded in 2018 after her father-in-law was diagnosed with MDS. As a small organisation working in a region of the world that faces many healthcare challenges, Blerina fully appreciates the support required by other organisations in similar situations.
Blerina has a PhD in Pharmacology and is a Advanced Research Fellow at the world leading university Imperial College London. Her research focuses on understanding how blood vessels function in health and disease. She has published many research articles and book chapters and has presented her work at many international conferences.
Alice Houk, Senior Director of Patient and Health Professional Services. Alice manages the research grant program, monitors newly published research and drug company announcements, coordinates the Scientific Symposium, serves as liaison to the Medical Advisory Board, and is the primary contact with other professional and patient organizations. She also leads efforts in educating health professionals about bone marrow failure diseases. Her nonprofit experience includes having served as a national organizer for the SAFE KIDS campaign and as a regional program coordinator for the March of Dimes. In addition, Alice has extensive experience working with volunteers in educational, fundraising, and program areas. She holds a Master’s degree in Health Policy from the University of Maryland.
Niels – the Patient
Niels is an MDS patient living in Slangerup, Denmark and a member of the Danish patient organization LyLe, which provides patient support in Denmark for lymphoma, leukemia and MDS patients. In 2016 the Danish MDS Patient Support Group created in December 2013 was merged into LyLe. Niels educational and professional background is in chemical engineering with extensive experience of safety and control in chemical plants, pilot plants and chemical laboratories.
Niels was diagnosed with MDS in july 2005 and treated with Aranesp and Neupogen for 3½ years and have since been under wait and watch at Rigshospitalet in Copenhagen, Denmark. When Niels switched doctors around 2012, his former doctor said: “I have no doubt that you have MDS, but I don’t understand why it is not developing”. Niels is married to Anna and lives in Slangerup, Denmark. Together they have 4 adult children.
Niels – the LyLe member
Since joining LyLe I have attended EHA in person both in person and virtually and reported about recent research developments about MDS in English and Danish aimed at patients interested in the newest knowledge about their disease. Until recently I have also provided information in Danish on a Google Site. However, due to increased cost this site has been taken down.
LyLe is a Danish patient society supporting patients with lymphoma, leukemia and MDS, and located in Næstved, and the chair is Rita O. Christensen – a CML patient of more than 20 years with a strong interest in improving the quality of life of blood cancer patients. LyLe provides information in Danish through the website www.lyle.dk, regular electronic e-mail newsletters and publishes a magazine three to four times a year. LyLe also maintains disease specific groups on facebook about different blood cancers, including MDS. The MDS facebook group has since 2016 grown from less than 30 members to now more than 130 members. The closed facebook groups provide a safe place to ask questions about living with a disease and also concerns about one’s treatment, e.g. side effects.
In the fall of 2021 Niels was invited to join the MDS Alliance Steering Committee. Niels is connected with the Harmony patient cluster. Niels has also been involved with different pharma companies as a patient expert advisor, and open to further involvement in the drug development process as called for in the latest ICH E8 guideline for clinical trials, e.g. trials closer to the home of the patient.