Time Magazine and Frances Perraudin’s article, “Is It Time We Paid More Attention to Rare Diseases?” articulates the inherent challenges faced by the rare disease community and briefly introduces you to Carrie Ostrea and her daughter Hannah who suffers from a rare disease called Neuronopathic Gaucher’s disease.
Yes, a global rare disease registry is critical and Yes, pharma needs to recognize the importance of the rare disease market.
However, at the end of the day, the only way the rare disease community can win and we can help families like the Ostrea’s is to rally behind rare disease as one community of 250 million worldwide.  Many patient groups have seen the importance of  joining together, and there are new initiatives that are addressing the ‘awareness’ problem.
Unfortunately nothing moves fast enough for the rare disease community of parents trying to treat chronically ill and medically fragile children. We need to turn on the jets and start working to drive the needs of the rare disease community out to the masses.
The Global Genes Project, a collaborative and grassroots program working to raise greater awareness for rare disease, is educating the general public and building a platform to help fund research.
Thank you Time Magazine and Frances Perraudin for bringing the important subject of rare disease to the forefront and for your continued support.  We need ongoing media coverage to ensure that rare disease receives the global attention it truly deserves.
Nicole Boice