by Madaline Spencer | Jun 19, 2024
Mark Frohlich, MD, CEO of Indapta Therapeutics, discusses the Phase 1 clinical trial for investigational drug candidate IDP-023, to treat patients with rare blood cancers. Non-Hodgkin lymphoma (NHL) is a group of malignant cancers originating from the...
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...
by Madaline Spencer | Jun 17, 2024
Melody Joy Paine, founder of Imperfect JOY, discusses how she captures the lies of patients with rare diseases through photography and filmmaking. Melody tries to emphasize the person when capturing their story by focusing on what makes them who they...
by Madaline Spencer | Jun 14, 2024
Leslie Edwin, President of the Cushing’s Support and Research Foundation (CSRF), and Gretchen Jordan, Associate Director of the CSRF, discuss their personal diagnostic journeys. Cushing’s syndrome is a rare endocrine disorder caused by...
by Madaline Spencer | Jun 13, 2024
Dean Suhr, co-founder and President of the MLD Foundation, discusses the need to get metachromatic leukodystrophy (MLD) as part of the Recommended Uniform Screening Panel (RUSP) and the recently approved Lenmeldy (atidarsagene autotemcel) and its effects on families....
