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…
World Rare Disease Day
Preparing for World Rare Disease Day 2013
On February 22nd, the Little Miss Hannah Foundation will be working with students in the Henderson area on our THIRD World Rare Disease Day awareness campaign – Jeans for Genes day! For the past two years, Vanderburg Elementary has led the way by hosting this wonderful event with their students and staff. This year,…
World Rare Disease Day
World Rare Disease Day is a time when the global community comes together in unity, to build voice, awareness and support for the hundreds of millions of patients and their families affected by rare disease. There are currently just over 7,000 rare diseases identified, affecting 30 million people in the US alone. Although these numbers are staggering, what is of…