Hurler-Scheie syndrome
Forum

Current topics:

• - What can we do to stay healthy while stuck at home?
  I feel discouraged about my weight loss.  The best thing for me is the pool, but they are all closed. 
• - US Approves First RNA Interference Drug
  Alnylam’s Onpattro (patisiran) can treat a rare hereditary disease by silencing a specific gene. The first therapy based on RNA interference (RNAi) gene silencing has been approved by the US Food a

Current topics:

• - What is the most frustrating or difficult aspect of living with a rare disease?
  Hello everyone,  How are you today? As you already know, a diagnosis of a rare disease can have a huge impact on one's life. It can bring new insights and information, but also many questions, cha
• - How were you diagnosed with a rare disease?
  Hello everyone, How are you doing? I thought I'd create this discussion to talk about being diagnosed with a rare disease! What were the first symptoms you experienced? How were you diagnosed? @A

Current topics:

• - COVID-19 vaccination campaign: Who is currently eligible for the vaccine?
  Hello everyone, How are you today?  Because the supply of the COVID vaccine is expected to be limited at first, the CDC has provided recommendations for federal, state, and local governments about wh
• - Coronavirus (COVID-19) - information and precautions
  Hello everyone, I thought I would open this discussion as the Coronavirus (COVID-19) has been a constant topic in the news and the health community. It's also an important topic for us here, be
• - Coronavirus: How to keep busy while social distancing?
  Hello everyone,  During this Coronavirus pandemic, many of us have been advised to "social distance" ourselves, limiting contact with strangers, friends and even in some cases, family. No more trips