by Madaline Spencer | Jun 2, 2025
Erin Sullivan, Executive Director of Sisters’ Hope Foundation, discusses her family’s experience with adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP). ALSP is a rare genetic, neurological condition largely due to damage to...
by Madaline Spencer | May 29, 2025
James Griffin, sickle cell anemia patient advocate, gives advice to patients with sickle cell anemia and healthcare providers. Sickle cell anemia is a rare genetic disease in which the body produces red blood cells that are sickle-shaped. The sickle...
by Madaline Spencer | May 24, 2025
Alison Bateman-House, PhD, Assistant Professor Division of Medical Ethics at NYU Grossman School of Medicine, discusses ethical concerns in rare diseases and expanded access programs. Rare disease patients, caregivers, and healthcare practitioners often face...
by Madaline Spencer | May 23, 2025
Connie Lee, PsyD, Chief Executive Officer of Alliance to Cure Cavernous Malformations, discusses cerebral cavernous malformation (CMM) and the diversity of patient advocacy group initiatives. CMM is a rare, capillary-venous malformation characterized by...
by Madaline Spencer | May 20, 2025
David Curren, patient advocate and board member for Breath of Hope Rhode Island, discusses his grandson’s diagnostic journey with idiopathic pulmonary hemosiderosis. Idiopathic pulmonary hemosiderosis (IPH) is a rare disease characterized by repeated...
