'R.A.R.E.' BOARD OF DIRECTORS AND ADVISORS ANNOUNCED
The RARE Project Announces Big Team Additions, Setting the Stage For Continued Success Thirty (30) million people in the US and 350 million people worldwide are affected by rare disease. Rare disease affects more children and their families then AIDS and CANCER combined worldwide. The RARE Project, developed by various rare disease leaders, is an [...]
New Approaches To Treatment Needed In Pediatric Cancer – Patient Podcast Series #3
In this third in a series of podcasts focused on rare disease patient advocates jointly produced by The Burrill Report, the California Healthcare Institute, and the Children’s Rare Disease Network, we speak to Susan Cornelius, business advisor to The Nicholas Conor Institute for Pediatric Cancer Research. When her granddaughter struggled against cancer, she was frustrated [...]
Podcast Series #2 – A New Model for Funding Research
In this second in a series of podcasts focused on rare disease patient advocates jointly produced by The Burrill Report, the California Healthcare Institute, and the Children’s Rare Disease Network, we speak to Beth Anne Baber, CEO of The Nicholas Conor Institute for Pediatric Cancer Research. When Baber’s son Nicholas was diagnosed with stage 3 [...]