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…
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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…
2018 Vegas Cares About Rare Event Success!
Our Vegas Cares About Rare Kids 5K this weekend was just amazing! We were excited to see so many people in our community come out to support our organization and meet our 20+ VIP kids. We are tallying final numbers and we will be sharing our recap update and photos from the event soon. We…
Vegas Cares About Rare Kids 5K on CBS 8 Las Vegas
Thank you 8 News Now and Kirsten Joyce for having Robert Ostrea, Nick Krshul, and Bradley on your show last week. We appreciate all of the support you continue to show our organization and special kids like Bradley with rare and medically complex conditions! Click here to view the video.
Three Students to be Awarded Hannah Ostrea Memorial College Scholarships
We are excited to announce that we will be awarding three local students the $1000 Hannah Ostrea Memorial College Scholarship at our Vegas Cares About Rare Kids 5K on 2/18/2018! We were touched and amazed by the quality of this year’s applicants and their essays they shared about being a sibling affected by childhood rare…