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…
World Rare Disease Day
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…
2017 Vegas Rare 5K photos are up!
Photos from our 5K event have been posted on Facebook. Tag yourself if you see yourself! Thank you for joining us to help celebrate our local rare kids and create awareness for childhood rare diseases on World Rare Disease Day. Event photos | Step and Repeat photos Save the date for next year –…
Today is Rare Disease Day
Today is World Rare Disease Day celebrating our Little Miss Hannah who was diagnosed with Gaucher Disease Type 2/3. Please take a few minutes to learn why this day is so important to our rare disease community.
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…