Google
Trusted Resources: News & Events
Latest announcements and gatherings
NORD/EURORDIS-Rare Diseases Europe Joint Statement on COVID-19 and Orphan Drug Legislation
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.
+myBinderRelated Content
-
Sickle Cell Disease Hotline | Cayenne Wellness Center and Sickle Cell Disease Education & AwarenessPatients living with Sickle Cell Disease...
-
You Should Get a COVID-19 Vaccine – Portuguesehttps://www.youtube.com/watch?v=t8UywR9x...
-
In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief ProgramUnited with more than 25 million America...
-
How to Prepare Your Family in Case COVID-19 Spreads in Your CommunityHere is what you can do to prepare your ...
-
Sickle Cell + COVID-19 + Mental Health | The Sickle Cell PodcastThe Sickle Cell Podcast is an effort by ...
-
You Should Get a COVID-19 Vaccine – Tigrinyahttps://www.youtube.com/watch?v=adgb4vtj...
-
You Should Get a COVID-19 Vaccine – Nepalihttps://www.youtube.com/watch?v=mdmgLDiY...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.
Powered by
Support for this site is provided by
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.