NLRP12.com's blog with news, updates and comments on all things rare and autoinflammatory

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 […]

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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 […]

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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 […]

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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, […]

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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: […]

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Humane Resources: Funding Restrictions in Rare Rheumatic Diseases