Living with a rare disease: a husband and father’s perspective
What does rare disease mean to you? To me, rare disease means a mutation called R1016X in a gene called NLRP12 on my son’s and […]
Campaigning
PatientsLikeMe and Shire to co-develop rare disease patient network
PatientsLikeMe and Shire are to work together to better understand rare disease patient health and disease progression. PatientsLikeMe is now a well-established online community of […]