Jordan Flake and her son Jackson were on their way from El Paso, Texas to Dallas, Texas when they were kicked off their flight because of their Ichthyosis diagnosis. They were on…
The final day of Rare Disease Week took place at the NIH Clinical Center last Thursday. Admission to the NIH was free, and participants had the chance to tour the…
My name is Alan. I cross many borders as a person with a rare disease. These borders are physical, geographical and psychological. Crossing so many borders has earned me the…
Tomorrow is Rare Disease Day! There are 7,000 rare diseases and disorders that affect about 30 million Americans. Three hundred million worldwide are affected by rare diseases and 95% of those…
As an official Friend of Rare Disease Week, we are highlighting some of our heroes and rare disease warriors' stories. Below was submitted by the ADNP Kids Research Foundation and…
This Wednesday, the last day of February is internationally-recognized Rare Disease Day - a day when we realize that in fact - rare diseases are not so rare. There are…
Welcome back to Editor's Choice! This week we have an interesting take on Parkinson's treatment. We also have an empowering article from one of PW's rare disease contributors. We are all feeling the…
We are back from Rare Disease Week in Washington, DC! And do we have some highlights for you below?! Rare Disease Day at NIH was not only informative, but encouraging.…
During Rare Disease Week, I have met the most amazing patients and advocates whose personal experiences have kept me motivated to continue spreading awareness not just for my disease, but…
With the new administration, questions of coverage, the ACA and how it effects those of us affected by rare disease have been causing major concern. Today at the 2017 Legislative…
The All of Us Research Program (The Program) at NIH is AWESOME. Here's what I learned at Rare Disease Day at NIH (#RDDNIH) and what you should know too, so…
At #RDDNIH, or Rare Disease Day at NIH, I was definitely troubled by a world map presented, that displayed emerging infectious diseases by region. Let's unpack this a little bit...…
If there is one thing clear at #RDDNIH, or Rare Disease Day at NIH, it's that there are amazing, brilliant people working hard for our community. The rare disease community…
Tuesday, February 28th is Rare Disease Day. And while we will be at #RDDNIH on the 27th, you can participate in Rare Disease Day from anywhere in the U.S.! Check out some…
When I walked in to Rare Disease Day 2016 at NIH, the atmosphere was full of hope, on a scientific level, legislative level and patient level. And I'm not just…
Wednesday of Rare Disease Week was Lobby Day! Patients, parents and advocates "stormed Capitol Hill" after a Lobby Day breakfast with speakers that included the newly confirmed FDA Commissioner, Robert M.…
This week's Meme Monday is rather special. Our chief editor is on the ground live tweeting from NIH during Rare Disease Day 2016 #RDD2016 - her first thoughts: "HERE, YOU…
Janelle is a 21 year old student at the University of Nebraska at Kearney. She has a great sense of humor, has shown horses for years and someday she wants…
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