We attended the Genetic, Rare, and Immune Disorders Symposium in Fairfax, Virginia, last weekend. Carrie, Hannah’s mom, was a speaker discussing the importance for families to get involved in advocacy for their rare disease communities. Robert, Hannah’s Dad, met with researchers and scientists to learn the latest advancements in rare disease treatments.
Latest News
#GivingTuesday – 11/29/2016
#GivingTuesday – November 29th! Help us give the gift of *hope* for hundreds of kids diagnosed with rare, life-limiting, and complex medical conditions at https://givingtuesday.razoo.com/us/story/Little-Miss-Hannah-Foundation
#CuresNOW – United Rare Disease Day of Action
* ACTION ALERT * PICK UP THE PHONE TODAY!! Every single person reading this can help us provide HOPE for children diagnosed with life-limiting rare diseases! #CuresNOW Today, we are calling on patients across America to take action for a United Rare Disease Day of Action. Our goal is to ensure that Congress passes the…
Meet Cecily, LMHF Grant Recipient
When we first met Cecily at our 2015 Rainbows in the Wind Festival, she just captured our hearts! We were thrilled to give her family a professional grade blender earlier this year so she can have pureed real food in her g-tube, and we are excited to know that she has been gaining weight because…
Fox 5 News Appearance – July 2016
#TBT Little Miss Hannah’s dad, Robert Ostrea, and Bethany Lafferty, mom to Little Miss Hannah child Kate, were on FOX5 Las Vegas this summer to talk more about our programs and our events. Thank you Jason Feinberg and your team for continuing to support the work we have been doing for children with rare diseases!