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.
Advocacy
#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…
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!
Little Miss Hannah Foundation joins Rare Disease Lobby Day to Advocate for Childhood Rare Disease Awareness and Funding
On Tuesday, February 27, 2013, our Little Miss Hannah Foundation joined a group of 150 patient and parent advocates of rare disease awareness marched on Capitol Hill to meet with legislators. The event was organized by the Rare Disease Legislative Advocates and meetings with representatives from 45 states were arranged. Our first goal was to make…
Getting Ready to “Storm the Congressional Hill”
This morning, we will all meet as a group at The Washington Club to be briefed on our visit to Capitol Hill and then we will head to Congress to deliver our messages. Our Nevada delegation consists of Robert and Carrie Ostrea of the Little Miss Hannah Foundation, based in Henderson, and Hugh and Chris…