Feb. 28, 2010 we will celebrate International Rare Disease Day – a day designed to highlight the unique issues surrounding living with a rare disorder.
Rare Disease Day got its start in Europe in 2008 by the European Rare Disease Organization. The National Organization for Rare Disorders began to sponsor the event in the United States in 2009.
In the United States a rare disease is any disorder that affects 200,000 or fewer patients.
This year’s Rare Disease Day will focus on the challenges of researching rare disorders.
For more information about NORD’s efforts for Rare Disease Day, visit: http://rarediseaseday.us/
El propósito de esta página de Internet es el de proveer información acerca del Síndrome de Hermansky-Pudlak. No es nuestra intención la de ofrecer diagnóstico o consulta médicas. No tome ninguna decisión o acción sobre su condición actual de salud basada en la información presentada sin consultar primero con su médico.


