Creating the Rare Disease Movement: The Power of the Patient Community
GlobalSkin is excited to offer our Members programming as part of Rare Disease Day 2021 by co-hosting a webinar, with the International League of Dermatological Societies (ILDS).
We are honored to have Dr. Ségolène Aymé, as our special guest speaker at this event. She is Emeritus Director of Research at the French Medical Research Council (INSERM) and the founder of Orphanet.
In 2008, Dr. Segolene Aymé co-authored a journal article entitled, "Empowerment of patients: lessons from the rare diseases community". Reflecting on this essay, Dr. Aymé speaks about the power of patients and patient organizations with regards to the Rare Disease Community. In this webinar she shares her unique perspective and talks about her important work with Orphanet and Expert centers.
About the Speaker:
Dr. Ségolène Aymé is a medical geneticist and was the founder and first president of the International Federation of Human Genetics Societies., and served during many years as chairperson for the Public and Professional Policy Committee of the European Society of Human Genetics.
In the field of rare diseases, she founded Orphanet, the European database of rare diseases and orphan drugs, and established the Orphanet Journal of Rare Diseases. She chaired the European Commission Task Force on Rare Diseases, the European Union Committee of Experts on rare Diseases, the WHO Topic Advisory Group for Rare Diseases, and managed the scientific secretariat of the International Rare Disease Research Consortium. She now chairs the Ethics and Professional Conduct Committee of the Paris Brain Institute and serves as an advisor for the French Health Data Hub.
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