Written by Robert Ostrea This past week was a very enjoyable and productive week for the more than 400 patient and parent advocates representing one of the more than 7000 rare diseases known to mankind. The last day of February is internationally recognized as Rare Disease Day. This date was … [Read more...] about My Rare Disease Week in DC 2018
legislative
Spotlight – Madi Vanstone
It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here. Madi Vanstone Patient Advocate | Cystic Fibrosis About Michael: … [Read more...] about Spotlight – Madi Vanstone
Sisterhood of the Traveling Advocates
Rare Disease Week in Washington, D.C. is a tremendous experience for those of us personally affected by rare disease. Sure, it is a fantastic opportunity to meet with our legislative representatives to have our voices heard. But there is another just as important, if not more therapeutic, reason … [Read more...] about Sisterhood of the Traveling Advocates
