Sharing rare disease data across borders
Those who contracted Covid-19 are experiencing what it’s like to have a condition that is difficult to diagnose without clear treatment options. This is the norm for people living with…
Spinocerebellar Ataxia
Spinocerebellar Ataxias belong to a group genetically inherited neurological disorder which leads to progressive loss of coordination, falls and eventual wheelchair dependence. There are more than 40 genetic SCA…
The Pompe Family
Last Thursday, April 4th 2019 I received a shocking news that my 43 days old nephew is having a rare disease. He has undergone many operations due to birth complications…
End of content
End of content