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.
LMHF News
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…
Meet Eva, LMHF Grant Recipient
Meet adorable 3-year-old Eva whose sweet smile and infectious personality just warmed our heart when we met her to deliver special needs tricycle. This bike will Eva an opportunity to be able to participate in more activities with her family! To help us provide kids like Eva the equipment they need, please go tohttps://www.littlemisshannah.org/donate
Pediatric Christmas Party
We had a wonderful time tonight volunteering with some of our carnival games at our local children’s hospital pediatric holiday party. Thank you St. Rose Dominican Hospitals – Siena Campus for including us!
#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…