Congenital disorder of glycosylation
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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:

• - 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
• - COVID-19 vaccine: What do you think?
  Hello everyone, How are you today? The pharmaceutical groups Pfizer (USA) and BioNTech (Germany), as well as Moderna (USA), announced last month that their vaccine candidates are around 94 and 95%
• - 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