by Madaline Spencer | Jul 9, 2024
Diane Schriner, Vice President of Erdheim-Chester Disease Global Alliance, provides an overview of Erdheim-Chester disease (ECD). ECD is a rare blood cancer characterized by the overproduction of histiocytes, which then accumulate in tissues and organs....
by Madaline Spencer | Jul 2, 2024
Andra Stratton, President and Co-founder of Lipodystrophy United, discusses the challenges of lipodystrophy from a patient’s perspective. Lipodystrophies are rare metabolic disorders characterized by the loss of adipose tissue. This leads to complications such...
by Madaline Spencer | Jun 25, 2024
Marie Abrego, a person with neuromyelitis optica spectrum disorder (NMOSD), and Wendy Erler, Vice President of Patient Experience at Alexion Pharmaceuticals Inc, discuss getting diagnosed with NMOSD and finding support. NMOSD is a rare autoimmune...
by Madaline Spencer | Jun 24, 2024
Greg Josephs, Myasthenia Gravis Foundation of America (MGFA) Volunteer Ambassador and patient with myasthenia gravis (MG), discusses living with a rare disease and valuable resources available to patients. MG is a rare chronic autoimmune neuromuscular...
by Madaline Spencer | Jun 18, 2024
Michelle Davis, Executive Director of the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), gives an overview of this rare disease as well as IFOPA’s advocacy work. FOP is a rare disorder in which skeletal muscle and connective...
