Thank you Coriell Institute for Medical Research for sharing our family's story and why we are so passionate about working towards change in our #raredisease community! "Advocacy can give patient families – families who have been dealt an often life-changing diagnosis – an opportunity to take … [Read more...] about ARTICLE: From Rare Diagnosis to Fierce Advocacy
advocacy
My Rare Disease Week in DC 2018
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
Learn more about the #100RareVoices Project
In the rare disease community, many advocates work tirelessly to create HOPE for their specific rare disease. Sometimes they may be an army of many, maybe even an army of two. The purpose of this project is to bring together 100 people in the rare disease space to see the effect of new … [Read more...] about Learn more about the #100RareVoices Project
5 Steps to Becoming A Rare Disease Parent Advocate
When your lifestyle becomes overwhelming because you are caring for a medically complex child, the idea of becoming a rare disease advocate becomes daunting. "How do I add advocating for my child's rare disease community when I can barely keep my head above water?" is something I hear all the … [Read more...] about 5 Steps to Becoming A Rare Disease Parent Advocate
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
My Passion for Advocacy
One of the most fulfilling things for me since Little Miss Hannah passed away in 2011 was to mentor other patients, families, and organization leaders to create HOPE for their community. I've had the opportunity to work with over 1000 advocates in our rare disease community as well as hundreds of … [Read more...] about My Passion for Advocacy
