The Role of Advocacy in Rare Diseases

Alisa Shakarian of Cambridge Biomarketing discusses the role of Advocates in rare diseases and the challenges of diagnosing rare diseases.

Rare in Common: Following the Experiences of Rare Families

Sam Falsetti, PhD of Cambridge Biomarketing discusses the film Rare in Common, which follows the experiences of rare families: their struggles, their strength, and their hope for the future as they confront the challenges of living with a rare disease. The movie has...

How Ovid Therapeutics Works With Patient Groups

Amit Rakhit, MD, Chief Medical and Portfolio Officer at Ovid Therapeutics, discusses how his company values working with patient groups. Ovid Therapeutics is a biopharmaceutical company focused exclusively on developing impactful medicines for patients and families...

Resources Available for Patients Suffering from Polycythemia Vera

David Gelly is a patient with Polycythemia Vera (PV). In this interview he discusses some of the resources available to patients with this rare condition, including Voices of MPN. PVs are a group of rare blood cancers called Myeloproliferative Neoplasms (MPNs). MPNs...

Discussing MERRF Syndrome at the Rare Disease Film Festival

Jessica Fein’s daughter Dalia has the mitochondrial disease MERRF Syndrome. Jessica spoke with us at the Rare Disease Film Festival, an event showcasing a myriad of films from around the world that addresses the challenges of life with a rare disease. Myoclonic...
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