Survey conducted by: Rare Patient Voice A survey conducted by Rare Patient Voice of over 3,000 US patients and caregivers across several hundred diseases and …
[[Whitepaper]] In the internet we trust? – Discerning quality rare disease information
Diagnosed with a rare disease? Google it. Receive a mess of returns, or perhaps nothing. Those living with a rare condition and their families face …
Creating Medicines with Real Value for Orphan Diseases
We were thrilled to attend the RareVoice Awards in November 2016, where we met up with our Everylife Foundation colleagues to celebrate the amazing work …
How to capture the patients and caregivers perspectives in rare diseases?
How to capture the patients and caregivers perspectives in rare diseases? Why are rare diseases different? Well, because they are rare! Epidemiology and natural history are …
Giving a voice to rare disease patients – The Hill
Giving a voice to rare disease patients – The Hill Searching through my Google Alerts and I came across a great article in The Hill …
What does Trump mean for Rare Diseases?
During a 60 Minutes interview Sunday night with Leslie Stahl, Trump detailed plans to keep ObamaCares’ pre-existing condition provision and provide a means for covering children living with …
How Are Patient Advocates Changing Clinical Research? We’ll Tell You!
Patient advocacy groups are just starting to realize their enormous potential to help advance treatment of cancer and rare diseases by supporting development of new …