Castleman Disease Collaborative Network

  Ruth-Anne Langan Pai of the Castleman Disease Collaborative Network (CDCN) provides an overview of what CDCN is doing for its patient and research community. Castleman disease is a group of rare disorders characterized by lymph node enlargement, specific...

Courageous Parents Network

  Jennifer Siedman, Patient Disease Outreach Coordinator for the Courageous Patient Network, explains how this non-profit organization helps those families managing children with a serious illness. The organization currently has over 700 videos by parents to...

Rare Disease Film Festival Coming to NYC

This May 18th, Chelsea in New York will host DISORDER, the rare disease film festival. This will be the third DISORDER festival that provides an opportunity for filmmakers to share their rare disease stories with a live audience of patients, advocates, researchers,...

Rare Disease Patients – Their Time Has Come

  Priya Kishnani, MD, Duke University School of Medicine, speaks to the rare disease patient community and says ‘their time has come’. Dr. Kishnani was speaking largely to the patient advocacy groups associated with lysosomal storage diseases, like Pompe disease,...

Rare Disease Families

  Dianne Linnehan, Director of Operations of the Phelan-McDermid Syndrome Foundation is also the parent of a person with Phelan-McDermid syndrome, and as she explains in this interview, her daughter provides her with immeasurable strength and joy, despite the...

Lipodystrophy Explained

  Andra Stratton, president of Lipodystrophy United provides an overview of lipodystrophy. Lipodystrophy is a rare medical condition in which persons have an abnormal distribution of fat in the body. That abnormality can present itself in many ways. People with...
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