Sandhoff disease
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 masks: Are you going to continue wearing a mask after you've had the vaccine?
  Hello everyone, I hope you're doing well. As the discussions continue on the end of the COVID-19 lockdown and social distancing measures, you may have some questions about the use of protective fa
• - Have you had any side effects from the COVID vaccine?
  I got mine Wednesday and have had several reactions. None on injection day but the day after, sore arm, dry mouth. Next day felt fine! Day after that had chills body aches and fever, stayed in bed and
• - COVID-19: How do you feel today?
  Hello everyone, I've opened this discussion so we can share our state of mind during this period of isolation! Let's come here everyday to share how we're feeling! What is the best way to stay pos