February 25, 2021February 24, 2021 As a Rare Disease Patient, I Have to Hustle to Access My Treatment Because there is little information available about certain diseases, many people may be misdiagnosed or undiagnosed. People with rare diseases are at a disadvantage ... Read more
February 24, 2021February 24, 2021 CBJF Seminar to Address NMOSD Care, COVID-19 Concerns on March 11 At an educational seminar next month, experts will discuss advances in the diagnosis and care of neuromyelitis optica spectrum disorder (NMOSD), as well as ... Read more
February 23, 2021February 19, 2021 Looking Back on Our Last Day of Normal When I think about Rare Disease Day 2020, it’s with mixed emotions. The day before, I got up at “o’dark-30” to catch an early ... Read more
February 22, 2021February 22, 2021 Rare Disease Day at NIH, Set for March 1, Growing Year by Year Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, ... Read more
February 17, 2021February 17, 2021 Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted ... Read more
News Horizon Expands R&D Portfolio by Buying Viela Bio February 17, 2021February 17, 2021 Horizon Therapeutics is growing its rare disease portfolio by acquiring the biotechnology company Viela ...
Columns, Strength of the Soul – a Column by Mileidys Almaguer Iniguez I’m Tired of Being Judged for Using a Disabled Parking Permit February 11, 2021February 9, 2021 If I asked a random person on the street if they think I have ...
News, syndicated Pandemic Won’t Stop Rare Disease Day on Feb. 28 February 10, 2021February 11, 2021 Scores of virtual events are afoot around the world to mark Rare Disease Day ...
Columns, The View From Here – a Column by Lelainia Lloyd Finding the Peer Support Team That Changed My Life February 9, 2021February 5, 2021 Every month for the past 13 years, I’ve had a standing date booked in ...
Columns, Strength of the Soul – a Column by Mileidys Almaguer Iniguez When I Was Paralyzed, Envisioning My Future Helped Me Hold On to Hope February 4, 2021February 1, 2021 This column is a message to all of the patients currently undergoing an extended ...
News NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns February 3, 2021February 11, 2021 While progress was made last year on newborn screening and other policy issues critical ...
Autoimmune Marker CH50 May Be Useful Measure of Soliris Efficacy February 3, 2021February 5, 2021 The autoimmune biomarker CH50 was directly impacted by treatment with Soliris (eculizumab) in three people ...
COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say January 27, 2021January 27, 2021 The two COVID-19 vaccines that recently received emergency approval from the U.S. and other ...
Recently Approved NMO Medications Are a Light on the Horizon January 14, 2021January 11, 2021 When I was diagnosed with neuromyelitis optica (NMO) in 2012, the U.S. Food and ...
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum January 13, 2021January 13, 2021
My NMOSD Diagnosis Was a Long and Difficult Journey December 10, 2020December 9, 2020 I was born and raised in Cuba, playing outside, running, and enjoying my friends. ...
NMOSD Patients Reflect General Public in COVID-19 Knowledge, Attitudes, Iranian Study Finds December 9, 2020December 9, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry November 19, 2020November 19, 2020
News, syndicated UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner October 29, 2020October 29, 2020 A photo of a bespectacled young boy, his red baseball cap slightly askew as ...
