PRESS RELEASE PSR Orphan Experts Launches Patient Organization Advisory Board
Unique initiative embedding patient-centric clinical research within PSR’s core services in orphan diseases.
Hoofddorp, the Netherlands, November 08, 2016 / B3C newswire
PSR Orphan Experts, a specialty orphan drug consulting and clinical research company, today announced the launch of a new Patient Organization Advisory Board to bolster its regulatory and clinical-stage drug development services in rare diseases. The advisory board comprises of up to seven experts from patient organizations, representing a wide range of therapeutic areas, and will play a key role in driving successful orphan drug programs for PSR’s clients.
PSR launched the Advisory Board in line with growing recognition, within both biopharmaceutical companies and regulatory agencies, that patients need a greater share of voice in the development of new medicines. Rare disease patients are often experts on their own conditions, and patient groups can be a driving force in pharmaceutical R&D. Members of the advisory board will strengthen PSR’s patient-centric approach in clinical research. They give patients and their representatives greater opportunities to provide input directly into clinical-stage development planning.
The inaugural members of PSR’s Patient Organization Advisory Board are:
Mr. Oliver Timmis, CEO AKU Society
Dr Elin Haf Davies, Child Health Advocate and Founder of aparito health
Dr Robert Derham, Co-founder CheckOrphan
Dr. Alasdair Robertson, Scientific Advisory Board Member, Duchenne UK
Alan Thomas, Founder of Ataxiaandme.org
“The PSR team is highly engaged with the rare disease cause, with a history of fundraising, providing education and participation in public-private partnerships,” said chairman of the Patient Organization Advisory Board Dr Oliver Timmis.“PSR also has a strong track record of successful partnerships with industry, key opinion leaders and patient organizations. Through this new advisory board, we look forward to having an even closer dialogue with the team, to the ultimate benefit of patients and families affected by rare diseases.”
“We are very proud of this exciting initiative, which we believe is a novelty in the clinical research organization sector,” said Roger Legtenberg, CEO of PSR Orphan Experts. “Our continued efforts to leverage the valuable knowledge available within patient organizations in the preparation and execution of orphan drug clinical trials will contribute significantly to PSR’s goal of assisting our clients to deliver new therapies for rare diseases.”
About PSR
Orphan drugs present fundamentally different regulatory and operational challenges compared to medicines for more common conditions. PSR Orphan Experts was established in 1998 as a full-service CRO and has become a leading expert in providing innovative regulatory and clinical approaches in orphan drug development in Europe. PSR has completed more than 200 orphan drug projects to date (ranging from regulatory consultancy to clinical execution), and is committed to contributing to the International Rare Diseases Research Consortium (IRDiRC) objective of delivering 200 new therapies for rare diseases by 2020.
Alan, a big step forward 
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