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The National Organization for Rare Disorders (NORD) and EURORDIS-Rare Diseases Europe share the global concern that diagnostics, therapeutics and vaccines to address COVID-19 be developed expeditiously. Our organizations represent the 30 million people in the US and 30 million people in the EU living with rare diseases. These individuals are disproportionately at risk if they contract this disease and will be among those who benefit the most when such products are developed and made available.
Notwithstanding our community’s stake in solutions for COVID-19, we do not believe that rare disease incentives that exist under our respective laws, the Orphan Drug Act in the US and the EU Regulation on Orphan Medicinal Products, are appropriate for use in this global pandemic in which hundreds of thousands, if not millions, will be affected. These laws have been highly successful at spurring development of therapeutics for those rare diseases which affect a very small number of people in the population and where there was a lack of investment in research.
education & researchCOVID-19 Resources – American Society of HematologyThe United States and countries around t...
videos & visualsSocial Adjustments & Response to COVID-19 – SCDAAhttps://www.sicklecelldisease.org/wp-con...
Community CenterA Sickle Cell Warrior Soldiers Through the PandemicSome first-hand advice and information f...
news & eventsCoping With Anxiety & Fear From Quarantine Dr. Gayle Rogers – WebinarThe Sickle Cell Mental Health Initiative...
news & eventsInformation About COVID-19 for Sickle Cell Disease PatientsCOVID-19, short for coronavirus disease ...
education & researchCOVID-19: Highest Risk Patients are Asked to Stay at Home for 12 Weeks [England]A million and a half people in England w...
videos & visualsYou Should Get a COVID-19 Vaccine – Swahilihttps://www.youtube.com/watch?v=Cvl_R8sJ...
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.