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…
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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…
Rare Disease Legislative Conference
The Rare Disease Legislative Advocates (RDLA) organized a fantastic conference today, held at the historic National Press Club in Washington, D.C., designed to empower patient and parent advocates to be more active in the legislative process. Presentations by successful advocates such as Anthony Castaldo from the U.S. Hereditary Angioedema Advocates, Emil Kakkis from the Everylife…
World Rare Disease Day Washington Kickoff Event – Here.Us.Now.
Monday night’s screening of Here.Us.Now., hosted by the Rare Disease Legislative Associates, launched a weeklong schedule of events in Washington, D.C. for rare disease advocates to raise awareness of the importance of rare disease research. The documentary features a Northern Nevada couple raising twin daughters afflicted with the rare Niemann-Pick C disease. Hugh and Chris…
3rd Annual “Jeans for Genes” School event!
On February 22, 2013, over 2500 students participated in Little Miss Hannah’s 3rd Annual “Jeans for Genes Day” School Awarness event! This year’s theme was “Education, Compassion, and Reflection of Childhood Rare Disease.” View pictures from this event! Students and staff from Vanderburg Elementary, Bartlett Elementary, and Lamping Elementary schools in Henderson, Nevada, left…