Business Wire

RAREMARK

14.6.2016 11:01:38 CEST | Business Wire | Press release

Share
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: http://www.orphandrugexperts.com

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: www.raremark.com

Contact:

For PSR
Roger Legtenberg, +31 23 556 3221
Email: roger.legtenberg@psr-group.com
or
For Raremark
Pete Chan, +44 207 034 3208
Email: pete.chan@raremark.com

About Business Wire

Business Wire
Business Wire
101 California Street, 20th Floor
CA 94111 San Francisco

http://businesswire.com

Subscribe to releases from Business Wire

Subscribe to all the latest releases from Business Wire by registering your e-mail address below. You can unsubscribe at any time.

Latest releases from Business Wire

Fourthline Trust Services Granted Status as Qualified Trust Service Provider in the EU24.8.2026 15:13:00 CEST | Press release

QTSP status allows for full control over the digital trust value chain from identity verification to qualified electronic signature (QES) issuance Fourthline Trust Services AB, a subsidiary of Fourthline, has been granted qualified status under the EU's eIDAS Regulation (910/2014)¹ and is now listed on the EU Trusted List as a Qualified Trust Service Provider (QTSP). Supervised by the Swedish Post and Telecom Authority (Post- och telestyrelsen, PTS), Fourthline Trust Services AB issues qualified certificates for electronic signatures. Fourthline, is the leading European provider of AI-powered identity verification (IDV) and compliance solutions. This milestone allows Fourthline full control over the entire digital trust value chain from identity verification to qualified electronic signature (QES) issuance. Ralph Post, Fourthline Trust Services AB Board Member: "By building our QTSP infrastructure similar to our sovereign AI-powered platform that drives our industry-leading identity ve

SLB Launches ExaCT Electrical Downhole CT Control System24.8.2026 13:02:00 CEST | Press release

New platform brings real-time electrical control to coiled tubing intervention, enabling greater precision, visibility and efficiency across intervention operations SLB (NYSE: SLB) today launched the ExaCT™ electrical downhole coiled tubing (CT) control system, an advanced intervention platform that introduces real-time electrical control to coiled tubing operations. By replacing pressure-dependent hydraulic actuation with electrical communication, power delivery and telemetry, the ExaCT system gives operators greater visibility, precision and control, helping improve intervention execution and reservoir access. The ExaCT system combines electrical power, telemetry and downhole measurements to enable communication with, actuation of and verification of downhole tools throughout an intervention. Continuous communication across the toolstring enables on-demand tool actuation across a wide range of intervention applications, including extended-reach and multilateral wells. The increased p

Wolters Kluwer Transforms Trusted Legal Content Into Structured, AI-Ready Intelligence That Powers the Next Wave of Legal AI24.8.2026 13:01:00 CEST | Press release

By transforming authoritative legal content into structured legal intelligence, Wolters Kluwer gives AI the context and relationships needed to deliver deeper research and higher-quality results Wolters KluwerLegal & Regulatory today announced the next evolution of Libra by Wolters Kluwer, its all-in-one Legal AI Workspace. By transforming authoritative legal sources, expert commentaries, and practical guidance into structured legal intelligence, Wolters Kluwer is making the relationships across the full breadth of its expert legal sources more explicit. This will enable deeper contextual research, more comprehensible answers, and workflow-ready results across legal work. Following the integration of Wolters Kluwer content into the Libra AI workspace in the first half of 2026, laws, rulings, expert commentaries, and practical guidance will now be linked to one another and to the matter at hand, creating a connected knowledge graph of expert-curated and authoredlegal knowledge that AI c

Daiichi Sankyo Appoints Markus Kosch to Lead Europe Business as Part of New Commercialization Organization24.8.2026 10:00:00 CEST | Press release

Daiichi Sankyo (TSE: 4568) today announced the appointment of Markus Kosch, MD, as Head of Europe Business, effective April 1, 2027. In this role, he will lead the company's European business within the new globally integrated Commercialization Unit and serve as General Manager of Daiichi Sankyo Europe GmbH, with legal responsibility for the company in Europe. The appointment reflects the next phase of growth of Daiichi Sankyo under its Five-Year Business Plan and the establishment of a new Commercialization Unit. Within this new structure, Markus Kosch will bring together the Oncology and Specialty businesses in Europe under one integrated leadership model to help bring innovative medicines to more patients across the region. For the past five years, Markus Kosch has led the Daiichi Sankyo Oncology Business Division in Europe and Canada, overseeing a period of significant growth and preparing the organization for an increasingly expanding oncology portfolio. Prior to joining Daiichi S

European Commission Approves DAYBU® (trofinetide) as the First and Only Treatment for Neurobehavioral Symptoms of Rett Syndrome in the European Union24.8.2026 09:01:00 CEST | Press release

Acadia Pharmaceuticals Inc. (Nasdaq: ACAD) today announced that the European Commission (EC) has granted marketing authorization for DAYBU (trofinetide) for the treatment of neurobehavioral symptoms of Rett syndrome in adults and pediatric patients aged five years and older, making it the first and only treatment approved for Rett syndrome in the European Union (EU). “The approval of DAYBU marks a significant milestone for the Rett syndrome community in the EU and advances our mission to bring this innovative treatment to patients and families who have long faced a profound unmet medical need,” said Catherine Owen Adams, Acadia’s Chief Executive Officer. “For people living with Rett syndrome, a devastating rare neurodevelopmental disorder, there have been no approved treatment options in the EU. We are proud to make DAYBU available and look forward to supporting patients, caregivers, and healthcare providers gain access to treatment." The DAYBU marketing authorization in the EU is prim

In our pressroom you can read all our latest releases, find our press contacts, images, documents and other relevant information about us.

Visit our pressroom
World GlobeA line styled icon from Orion Icon Library.HiddenA line styled icon from Orion Icon Library.Eye