Rare & Undiagnosed Network (RUN)
Rare & Undiagnosed Network (RUN) is a group of advocates, patients, families, researchers, and healthcare providers whose mission states: “To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.” Find out more here.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Rare Disease
Hands Speak Louder Than Words in Rare Disease Video
Helping hands can do truly amazing things. Eurodis, the champions of Rare Disease Day, displays that in their 2015 Rare Disease Day theme video.
Yes Ankylosing Spondylitis, I Can Have a Healthy Baby
If you are considering pregnancy while managing ankylosing spondylitis, you may have a lot of questions, such as will you have the typical back pain that
Pill-Popping Swimmer Gets a Pass, Wins Medals
At one point, gold-medal winning Singapore swimmer Clement Lim was bedridden for two days because he has Ankylosing Spondylitis, or A.S. “I was actually quite
These Shocking HAE Stories Will Make You Want To See Change
There are some crazy diseases out in the world today, and hereditary angioedema, or HAE, is one of them. To see the symptoms in action, you
Katie Never Expected THIS at HAE Day
After six years of misdiagnoses and crushing disappointment, a doctor finally figured out that Katie had a rare genetic condition centered around a protein called
These 5 HAE Wishes Will Uproot the Best in You
Star light, star bright, first star I see tonight? Forget it–Shire’s growing something a little more down to Earth. As part of their Me, Not
