May 2011 ~ eNews NORD to Co-sponsor 1st Annual Rare Diseases/Orphan Products Summit NORD will co-sponsor the 1st Annual Rare Diseases/Orphan Products Summit on Oct 11-13, under the auspices of the Drug Information Association (DIA). Collaborating organizations include EURORDIS (the European Rare Disease Organization), FDA, NIH, and Duke Clinical Research Institute. In addition to plenary sessions with senior government, industry, and patient speakers, there will be three tracks at the … [Read more...]
NORD Foundation – May 2011
May 20, 2011 by admin
Filed Under: Courtney's Story Tagged With: A Celebration of Women, advocacy, audiences, brain diseases, chronic sarcoidosis, Commissioner Margaret Hamburg, Congressional Caucus, corticobasal degeneration, Courtney' s Story, disease, education, eNews, enhanced collaboration, European Rare Disease Organization, EURORDIS, government., greater transparency, including medical professionals, industry, information, May 2011, MD, Medical Foods Equity Act, multiple system atrophy, NIH Chemical Genomics Center, NORD Foundation, PML., progressive supranuclear palsy, Rare Disease Org., Recent Drug Approvals, registration, Related Brain Diseases (CurePSP), science-based decision-making, Senator Bob Casey, Tammy Baldwin, viral disease, virus, WOMEN of ACTION™, women taking action, women.
Courtney Leigh Hewitt – Taking Action: A Father’s Cry for Awareness!
November 18, 2010 by admin
A Celebration of Women celebrates the Life of Courtney Leigh Hewitt, never to be forgotten or lived in Vain. The passing of Courtney to the horrible viral disease of PML has inspired a devoted Team of empassioned people to enter Crusade mode, creating global Awareness of PML. Long live the Spirit of Courtney Leigh Hewitt! … [Read more...]
Filed Under: CA-- USES, Courtney's Story, WOMEN Taking ACTION Tagged With: advice, BOOK, Courtney's Story of PML, education, girls, healing, health, HIV, MEDIA, NORD Foundation, PML., raredisease.org, recovery, research, TRANSFORMATION, viral, virus, woman, women.
