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 charge of their situation, participate in research, and focus…
Advocacy
My Rare Disease Week in Washington DC 2018
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 chosen since February is the only month with 28 or 29…
Rare Disease Week 2017
Reprinted from Linked-In The last day of February is designated internationally as World Rare Disease Day and organizations representing patients and advocates dealing with rare diseases come together to raise awareness through local events and activities. Additionally, each year in the United States, hundreds of rare disease advocates convene in Washington, D.C. to meet with…
The Fight Never Ends for Rare Disease Advocates
By Robert Ostrea As an involuntary member of the rare disease community (my youngest daughter, Hannah, was diagnosed with a rare, genetic disease shortly after birth), I have been fairly active in participating in events and organizations geared towards raising awareness of as well as educating people in positions of power (elected officials) about the…
#CuresNow has passed! 21st Century Cures Act
Happy Tears today following the overwhelmingly positive vote in the Senate today for 21st Century Cures! Our family has worked with hundreds of rare disease advocates all over the U.S. to create HOPE for our rare disease community. Thank you U.S. Senator Dean Heller and Senator Harry Reid for putting our Nevada rare children’s needs…