Kauffman Foundation To Screen “HERE. US. NOW.” Documentary at Harmony Gold Theater In Los Angeles

Ewing Marion Kauffmann Foundation Presents Here.Us.Now.  Friday, September 28, 2012 - 
7 p.m.

Foundation Commissioned Emmy Award-Winning Filmmaker Rudy Poe to Chronicle Challenges in Medical System Facing a Family Battling a Fatal Rare Disease LOS ANGELES, CA – September 19, 2012 – The Ewing Marion Kauffman Foundation (www.kauffman.org), the largest American foundation to focus on entrepreneurship, today announced […]

USA Today Spotlights Rare Family Fighting For FDA Approval To Treat Dying Twins

Addi and Cassi Hempel suffer from Niemann Pick Type C disease

Advocating for your children can and does make a difference! On March 6, 2012, USA Today published an article spotlighting a brave family with twin girls suffering a rare and fatal genetic disease.  Niemann Pick Type C disease, often called childhood Alzheimer’s, has brought the Hempel family […]

Washington Post Supplement sheds light and insights into the world of rare disease


Many Advocates, Industry, Parents, Advocacy Organizations have participated in the first in a series of Rare Disease reports being produced by Media Planet. This first report will be seen by over 4 million readers of the Washington Post, available on newsstands around the country today. […]