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
Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays.
Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays. New paper from Orphanet J Rare Dis. 2017 Apr 11;12(1):68. doi: […]
NORD Launches Free CME Program to Educate Medical Professionals about Rare Diseases
he National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the launch of a […]
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 […]
NLRP12.com’s 2017 Scottish Council Manifesto released
For the 2017 Scottish Local Council Elections NLRP12.com have released their manifesto for council candidates throughout Scotland. We had hoped to be able to get […]