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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 […]

Global Genes Connect Collaborate Advance

Global Genes® to Convene RARE Partnering and Investor Forum to Accelerate Drug Development for Rare Diseases

May 23, 2017 John 0

[Aliso Viejo, CA] May 19, 2017 – Global Genes®, a leading rare disease patient advocacy organization, will host the inaugural RARE Partnering and Investor Forum, […]

Orphan Drugs

We must act as England falls behind on access to rare disease medicines

May 14, 2017 John 0

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 […]

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 […]

NHS ENGLAND NICE

Pharma warns new NICE rules will delay access to meds

May 6, 2017 John 0

Pharma companies are warning that changes to the way the National Institute for Health & Care Excellence (NICE) and NHS England (NHSE) assess new medicines, […]

Prices of Drugs Rare Disease

Ultra-rare disease drugs: has access in England just got harder?

May 6, 2017 John 0

Story from Andrew McConaghie on PharmaPhorum New rules on market access introduced by NICE from 1 April will affect most new medicines – but gaining […]

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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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