Nov 13, 2025
Andrew Rosen, Chief Executive Officer of the National Ataxia Foundation, has a dual mission of accelerating research for treatments and cures for Ataxia while supporting the patients affected by this rare disease. Ataxia describes both a group of hereditary genetic diseases and symptoms of lack of coordination seen in...
Nov 13, 2025
Andrew Rosen, Chief Executive Officer of the National Ataxia Foundation, has a dual mission of accelerating research for treatments and cures for Ataxia while supporting the patients affected by this rare disease. Ataxia describes both a group of hereditary genetic diseases and symptoms of lack of coordination seen in...
Nov 11, 2025
Dr. Adam Kilian, Director of the Rheumatology Fellowship Training Program at the St. Louis University School of Medicine, focuses on IgG4-related disease, a rare multi-organ disease that has only recently been recognized due to significant diagnostic challenges. The MITIGATE trial is a landmark study that demonstrated...
Nov 11, 2025
Dr. Adam Kilian, Director of the Rheumatology Fellowship Training Program at the St. Louis University School of Medicine, focuses on IgG4-related disease, a rare multi-organ disease that has only recently been recognized due to significant diagnostic challenges. The MITIGATE trial is a landmark study that demonstrated...
Oct 23, 2025
Kerry Mello-Parker, Director of Rare Diseases and REMS programs at Shields Health Solutions, addresses the complexities and challenges faced by patients with rare diseases including diagnostic delays and limited access to medication. Using an integrated specialty pharmacy model, Shields works with pharmacists to have...