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How to advocate for yourself or your child when your doctor knows less about a condition than you
Living with an ultra-rare genetic condition comes with a unique…
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My 28th birthday and how I reflect on getting my rare diagnosis
Today, the 11th of May, is my birthday. Today I…
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Some practical tips and advice for people with motor difficulties
If I speak for myself, I would definitely say that…
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When a diagnosis becomes a lifequake: navigating Poretti–Boltshauser Syndrome with resilience and clarity
Some moments don’t just change your plans — they change…
Latest Posts
- How to advocate for yourself or your child when your doctor knows less about a condition than you
- My 28th birthday and how I reflect on getting my rare diagnosis
- Some practical tips and advice for people with motor difficulties
- When a diagnosis becomes a lifequake: navigating Poretti–Boltshauser Syndrome with resilience and clarity
