X-linked cerebral adrenoleukodystrophy
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Current topics:

• - Do you have a Bucket List?
  Hello everyone, You can call me movin_on. I am diagnosed with Parkinson's. For those of you who may not be familiar with this term, a Bucket List is a list of things that one has not done before bu
• - Applying for Supplemental Security Income (SSI)
  Hello I have Spina Bifida and Hydrocephalus.I have tried applying for SSI disability but have been denied because I have to work to support myself in the meantime.Has anyone experienced this and we're
• - Do you have a support animal?
  Hello,  I have depression, anxiety, and epilepsy.  Does anyone have a support animal to calm you down or in this case a trained dog for epilepsy? I've had dogs practically all my life but now my b

Current topics:

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

Current topics:

• - COVID booster vaccine: What do you think?
  Hello everyone, I hope you're doing well! As you all may have heard, there has been discussion both in the US and in other countries about  a COVID-19 vaccine booster vaccine to be potentially lau
• - 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
• - 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%