Advocacy

Leading advocates and experts share their experiences
Castleman Disease Collaborative Network

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.

Courageous Parents Network

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.

Rare Disease Families

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 rare disease that afflicts her.

The Origins of KIF1A.org

The Origins of KIF1A.org

Luke Rosen, founder of KIF1A.org talks about the origins if this rare disease patient organization to help collect data on children with KIF1A associated neurological disorder (KAND).

  • Sign up
Lost your password? Please enter your username or email address. You will receive a link to create a new password via email.
We do not share your personal details with anyone.