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
2020 events
Tell your story!
Paul's story CTD
Gillian - Israel
Limbic encephalitis with LGI1 antibodies
Sadly, since writing Paul's story on Limbic encephalitis anti-LGI1 and neuromyotonia (UMN), we are grieving because he passed away in mid-April this year. I would therefore like to add the following:This
Battle Cry
Nicole - Italy
Systemic mastocytosis
April 23th, 2017. It all started like this, or rather, it made everything worse like this ... Since I was a child I have suffered from muscle and bone pain, often also from gastrointestinal problems, I
Meet Avalon, Young Founder
Erin - United States
Hypophosphatasia
Avalon (Avie) has a rare genetic disease, Hypophosphatasia (HPP), that is characterized by the abnormal development of bones and teeth. Avie, who is all too familiar with HPP, explains it in layman's terms: