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PSR Orphan Experts and Raremark announce strategic partnership in rare disease

PSR Orphan Experts, a specialty orphan drug consulting and clinical research company, and Raremark, a new online service for families affected by rare disease, today announced a strategic partnership to accelerate the development of new treatments.

The collaboration will leverage the companies’ complementary experience and capabilities, addressing the unique challenges involved in clinical research in orphan indications.

Raremark will engage families in the clinical trial process, helping them understand what taking part in a study means, and keeping them informed while participating in one.

PSR will provide strategic and operational consulting, in addition to traditional contract research organization (CRO) services, to preclinical and clinical-stage companies developing drugs for rare diseases.

“Most of the 7,000 known rare diseases lack approved drugs, meaning that clinical trials may be the only opportunity for people affected to access treatments,” said Roger Legtenberg, CEO of PSR. “The rare disease community is generally very active, but there is a need for increased awareness that clinical trials are an option. We believe Raremark’s approach of engaging rare disease patients and families will bring benefits for all involved in drug development.”

Julie Walters, Raremark’s founder, said: “We’re impressed by PSR’s genuine commitment to the patient community, its sole focus on orphan disease, and the high caliber of its management team and long-standing relationships with specialist research centers.”

About PSR Orphan Experts

PSR is a leading expert in orphan drug development. Established in 1998, PSR helps companies to design and execute successful clinical development strategies for orphan indications, specializing in complex clinical development programs requiring innovative regulatory and clinical approaches. PSR's services range from regulatory & clinical consultancy to full clinical research services (project management, monitoring, regulatory affairs, electronic data capture/data management and statistics/medical writing). Visit:

About Raremark

Raremark’s mission is to transform one million lives in rare disease. Its proprietary platform removes feelings of isolation by opening up a world of trusted and verified information through the indexing of over 2,000 scientific articles and medical guidelines for each disease. Users can comment and share knowledge, connect with specialist centers of research and find out about potential drugs in development. Visit:


Roger Legtenberg, +31 23 556 3221
For Raremark
Pete Chan, +44 207 034 3208

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