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The Team
L'Association Cure MVID was created in 2023 by a family affected by the disease. The association is managed by a board and a scientific council.
We are all parents of a child affected by MVID, and our aim is to support all affected families through our actions on behalf of patients and scientific and medical research.
If you would like to get involved in the fight against MVID or represent the association in your country, please contact us.
Ganesh Mamodaly
Chairman and founder
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Patient contact France
Sarah Rajabaly
Treasurer
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Süreyya Avci
Office member
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Patient contact in Austria, Germany, Switzerland and Turkey
Anke de Vries - Appelboom
Office member
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Patient contact Netherlands
Kinn Chan de Velarde
Office member
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Patient contact USA and Canada
Do you have expertise in MVID? Contact us to join the association's Scientific Advisory Board.
The association would like to set up a Scientific Advisory Board to help it understand all the research projects concerning MVID, and to answer any questions families may have about the disease.
The essential role of the Cure MVID Scientific Advisory Board
TheCure MVID Association is dedicated to promoting scientific research into the treatment of MVID, a rare and disabling disease. At the heart of this crucial mission is the association's Scientific Advisory Board, a vital entity that guides and informs strategic decisions to advance research and help patients.
- Cutting-edge scientific expertise:
The Scientific Advisory Board is made up of leading researchers, clinicians and experts in various fields related to MVID, including molecular biology, genetics, intestinal physiology and gene therapy. Their collective expertise forms a solid basis for evaluating the latest scientific and technological advances relevant to the understanding and treatment of MVID.
- Evaluation of research projects :
One of the key tasks of the Scientific Advisory Board is to evaluate research proposals submitted to the association. These proposals may come from researchers around the world, seeking to develop new therapeutic approaches, identify biomarkers or understand the underlying mechanisms of MVID. The Board rigorously reviews these proposals, assessing their scientific relevance, feasibility and potential to advance understanding and treatment of the disease.
- Strategic direction:
In addition to evaluating research projects, the Scientific Advisory Board helps define the association's strategic direction in research. This includes identifying research priorities, allocating financial and human resources, and exploring new collaborations and partnerships with other research institutions, the pharmaceutical industry and regulatory bodies.
- Patient and family support:
The Scientific Advisory Board also plays a crucial role in communicating scientific advances and treatment prospects to patients and their families. By providing regular updates on the state of research, new discoveries and ongoing clinical trials, the Council offers important support to people affected by MVID, helping them to understand the progress being made and the options available for their treatment.
- Ongoing monitoring and evaluation :
Finally, the Scientific Advisory Board provides ongoing monitoring and evaluation of the research projects funded by the association, ensuring that they are progressing in line with set objectives, and adjusting strategies and priorities where necessary in line with new discoveries and scientific developments.
In short, the Scientific Advisory Board of the Cure MVID Association plays a central role in promoting scientific research into the treatment of MVID. Through its expertise, rigorous evaluation, strategic guidance and patient support, it contributes significantly to advancing the fight against this devastating disease, offering hope to those affected.
Affiliated Association
