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
Medicine X 2017: Building Disease Specific Educational Tools and Resources
Last year, I had the incredible opportunity to co-present at the 2017 Medicine Ed X conference at Stanford University in California. The innovative ideas that were being presented were so exciting and encouraging, yet they were mostly geared towards those with common physical and mental health … [Read more...] about Medicine X 2017: Building Disease Specific Educational Tools and Resources
Article: Steps to Take After Receiving a Rare Diagnosis
As a rare parent advocate, one of the questions I get asked most by newly diagnosed families is "What do I do next? How will I manage this?" My good friend and colleague, Anne Bruns, and I co-authored this article for Exceptional Parents Magazine's annual "Navigating Special Needs Resources" … [Read more...] about Article: Steps to Take After Receiving a Rare Diagnosis
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
