Creating the Rare Disease Movement: The Power of the Patient Community
February 25, 2021
10:00 - 11:00 am Eastern Standard Time Canada/US (EST)*
16:00 - 17:00 Central European Time (CET)*
*For a time in your timezone, click here.
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 will speak about the power of patients and patient organizations with regards to the Rare Disease Community. She will share her unique perspective and talk about her important work with Orphanet and Expert centers.
We look forward to your participation in this webinar, as you continue to support your patients in new and innovative ways.
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.
Officially founded in 1935, the International League of Dermatological Societies (ILDS) has been promoting skin health around the world for over 80 years. Its forerunner began in 1889 as the first of many World Congresses of Dermatology. Today, the ILDS represents dermatology at the highest level with 196 Member Societies from more than 90 countries, representing over 200,000 dermatologists. ILDS works closely with partners around the world including the World Health Organization (WHO), with whom we are in official relations, in order to improve skin health for all people around the world. The ILDS is committed to the inclusion of the patient voice in our work and we collaborate with patients’ organisations including Global Skin, across a range of areas.
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