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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 […]

A Nuanced Message: Marketing to the Rare Diseases Community

May 10, 2017 John 0

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 […]

Gene Therapy

A New Gene Therapy Cure Just Treated Its First-Ever Patient

May 9, 2017 John 0

Rarefied Cures This March, a child with severe combined immune deficiency (SCID) became the second commercial gene therapy patient ever. The patient started receiving a drug […]

Pharma Prices

Big Pharma Losing Leverage as Payers Raise Pressure on Price

May 7, 2017 John 0

Consolidation among insurers, pharmacy benefit managers key Drug companies are citing growth by volume instead of price Byline: Jared S. Hopkins and Doni Bloomfield, Bloomberg […]

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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