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Month: June 2017

Funding Restrictions

Humane Resources: Funding Restrictions in Rare Rheumatic Diseases

June 20, 2017 John 0

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 […]

Patient Engagement

Rare Disease Clinical Development: The Crucial Need for Patient and Parent Involvement

June 20, 2017 John 0

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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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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