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NLRP12 FCAS2 RARE DISEASE

Living with a rare disease: a husband and father’s perspective

May 24, 2017 John 0

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 […]

Rare Voices Australia

Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays.

May 15, 2017 John 0

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

May 10, 2017 John 0

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

PatientsLikeMe and Shire to co-develop rare disease patient network

May 9, 2017 John 0

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

May 7, 2017 John 0

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 […]

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What advice would you give to others?

  • Humane Resources: Funding Restrictions in Rare Rheumatic Diseases
  • Rare Disease Clinical Development: The Crucial Need for Patient and Parent Involvement
  • Living with a rare disease: a husband and father’s perspective
  • Global Genes® to Convene RARE Partnering and Investor Forum to Accelerate Drug Development for Rare Diseases
  • Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays.
  • We must act as England falls behind on access to rare disease medicines
  • App-based tool for clinicians using facial recognition, AI and genetic big data to improve rare disease diagnosis and treatment
  • Three new medicines cleared for use by NHS Scotland
  • NORD Launches Free CME Program to Educate Medical Professionals about Rare Diseases
  • A Nuanced Message: Marketing to the Rare Diseases Community
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