Change.org Rare Disease Campaign Update
I met our rare disease campaign Change.org team a little over a week ago (by telephone). They sound great – Matt, Robin, Josie and Maria. I’ve been chatting with rare disease community folks getting thoughts on the campaign – Sharon Terry, Imel Kakkis, Chris Austin and Brad Margus. I’ve been reading lots of different things [...]
Rare Disease wins spot as Top 10 Idea at Change.org!
We did it! Link HERE. More details soon. Thank you to everyone who made this happen! Recommend on Facebook Share on Linkedin share via Reddit Share with Stumblers Tweet about it Subscribe to the comments on this post Print for later Bookmark in Browser Tell a friend
Make Rare Disease a Top USA Health Care Priority, Vote Today at Change.org – 25 Million+, It is time to care about rare disease.
For the millions and millions of kids and adults, brothers and sisters, moms and dads, families of every sort, friends, doctors, researchers, non-profits, foundations, research institutions, hospitals and advocacy groups, for everyone touched by rare disease, put on your blue jeans, put on your blue jeans denim ribbon, and vote for rare disease at Change.org [...]
Parent Report from the Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data Conference
Last week I spent 3 days in Bethesda, Maryland attending a registry “boot camp” with Genetic Alliance and a rare diseases registry conference hosted by the NIH Office of Rare Diseases Research. From what I gathered, a “registry” for rare diseases can mean a simple contact list, a collection of clinical information input by patient [...]