Advocacy

Leading advocates and experts share their experiences
How Ovid Therapeutics Works With Patient Groups

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

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

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...

Choroideremia Research Foundation

Choroideremia Research Foundation

Cory MacDonald, Operations Manager, Choroideremia Research Foundation, discusses the origins of his organization and the various clinical trials for this rare eye disorder. Choroideremia is a condition characterized by progressive vision loss that mainly affects...

Raising Awareness of Myeloproliferative Neoplasms (MPNs)

Raising Awareness of Myeloproliferative Neoplasms (MPNs)

Emmy-Award Winning Actress Finola Hughes discusses why she is raising awareness for a group of rare, chronic and under-recognized blood cancers called Myeloproliferative Neoplasms (MPNs) Finola Hughes is dedicated to increasing awareness for rare blood cancers, while...

Patient Describes His Journey With Polycythemia Vera

Patient Describes His Journey With Polycythemia Vera

After being diagnosised with polycythemia vera (PV), David Gelly finds himself on a new journey. In this video, he explains his diagnosis of PV—one of a group of rare, chronic blood cancers known as myeloproliferative neoplasms (MPNs). MPNs are rare, chronic blood...

Lupus Overview

Lupus Overview

Lupus erythematosus is a name given to a collection of autoimmune diseases in which the human immune system becomes hyperactive and attacks healthy tissues.[1] Symptoms of these diseases can affect many different body systems, including joints, skin, kidneys, blood...

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