Suchergebnisse
Suchergebnisse:
Vor 4 Tagen · 2022 RARE Health Equity Summit. The RARE Health Equity Forum, hosted in partnership with the Rare Disease Diversity Coalition (RDDC) convenes rare disease stakeholders to identify collaborative efforts to address inequities in the care of patients with rare diseases. This event provided attendees with strategic insights and tools to empower and ...
Vor einem Tag · This is the moment you’ve been waiting for! Our popular and successful Ambassador Programme is now open to new applications, giving you the chance to become part of our team as a rare disease ally!
Vor einem Tag · This week, IRDiRC will be represented at the BIO International Convention San Diego (USA) by Deborah Requesens (Director, JumpStart Program, Orphan Disease Center, USA), who will be speaking in the session Breaking the Rare Disease Deadlock through Multi-Stakeholder Collaboration on Wednesday, 5th June, from 11:00 AM to 12:00 PM local time.
Vor 5 Tagen · Sponsored by Orchard Therapeutics. Are rare diseases really so rare? 30 May 2024. 1 in 17 people in the UK are affected by a rare condition. One such condition is metachromatic leukodystrophy (MLD). In this article, experts explain what MLD is, how it can present in children, and the importance of an early diagnosis. (Photo: Orchard Therapeutics)
Vor 5 Tagen · Nicolas Lévy, Professor of Medical Genetics, Scientific Director of Rare Diseases at Servier. “Today, 95% 12 of rare diseases do not yet have treatment in any area. This field holds great potential for medical innovation and research innovation in life and health sciences. And it is a great opportunity for researchers as well as for society ...
Vor 4 Tagen · Policy Statements & Letters to Policymakers. For decades, NORD has pursued federal and state policies to improve the lives of Americans impacted by rare diseases. This page is updated daily to provide timely information on our policy efforts. Please contact policy@rarediseases.org if you have questions or need additional information.
Vor 5 Tagen · We explore, promote and contribute to the latest developments in rare disease research, with the goal of improving the lives of the many people living with rare diseases.
