Humane Resources: Funding Restrictions in Rare Rheumatic Diseases
As any rheumatologist knows, most non-medical individuals don’t really know what ‘rheumatology’ is. Not so much of a bad reputation, as no reputation. Relatives and […]
Articles by John
Rare Disease Clinical Development: The Crucial Need for Patient and Parent Involvement
LuAnn Sabounjian, Head of Clinical Operations & Drug Safety, PROMETRIKA, LLC Rare Disease Clinical Trials February 28th, 2017 was the tenth observance of Rare Disease […]
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 […]
Global Genes® to Convene RARE Partnering and Investor Forum to Accelerate Drug Development for Rare Diseases
[Aliso Viejo, CA] May 19, 2017 – Global Genes®, a leading rare disease patient advocacy organization, will host the inaugural RARE Partnering and Investor Forum, […]
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: […]
We must act as England falls behind on access to rare disease medicines
It is crucial that we develop a bespoke process to evaluate ‘orphan’ medicines if we are to eradicate inequality in the system, says Sebastian Stachowiak […]
App-based tool for clinicians using facial recognition, AI and genetic big data to improve rare disease diagnosis and treatment
Boston startup FDNA, which makes a suite of apps called Face2Gene that use facial analysis, artificial intelligence and genomic insights in hopes of improving diagnoses […]
Three new medicines cleared for use by NHS Scotland
The Scottish Medicines Consortium has endorsed three medicines for routine use by NHS Scotland, offering new options to treat a rare eye disease, lupus and […]
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 […]
A Nuanced Message: Marketing to the Rare Diseases Community
Check traditional marketing strategies at the door, because when it comes to rare diseases they simply don’t apply. Experts say established methods of directing campaigns […]