Patient involvement is the key to effective research for rare diseases
28 february
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
2018 events
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Rare disease day 2018 video
Out now!
Official Rare Disease Day 2018 video!
Tell your story!
Connie's Cause
Becky - United Kingdom
Congenital pulmonary lymphangiectasia
Hi please can anyone help, as a family we are desperate to find help for my 7 month old niece Connie Warren. She has been diagnosed with CPL - Congenital Pulmonary Lymphangiectasia a rare lung disease
Is this ALL I am?
Wendy - United States
Small fiber sensory neuropathy
I decided to add my experience here after reading Brooke's story. It has been almost fifteen years since the onset of Small Fiber Sensory Neuropathy in late 2004. The disorder is prefaced "Idopathic",
Progressive Pain
Laurie - United States
Ledderhose disease
About ten years ago I felt a painful lump in my left foot. I ignored it thinking I must have stepped on something. Over time I did a bit of research and discovered I have Ledderhose disease. I had my first
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News
Today is Rare Disease Day!
Today is Rare Disease Day!
Today is Rare Disease Day 2018! With events happening in over 90 countries and regions across the world, together we can raise awareness to help further the rare disease cause. 5 new countries are pa...
28 Feb 2018
Meet Mirina
Meet Mirina
Mirina stars in the Rare Disease Day 2018 official video and is living with Ehlers-Danlos syndrome. She was diagnosed at the age of 4 and has been living with the rare connective tissue disease from b...
09 Feb 2018
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