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

Braun Launches the Next Generation of Electric Shaver With Braun NEVO Introducing a New Dawn of Smooth Touch2.7.2026 08:00:00 CEST | Press release

With over 100 years of exceptional German craftsmanship, Braun introduces Braun NEVO, an electric shaver redefining what a close shave and smooth skin mean. Every element has been reimagined: the sleek unibody stainless steel handle, the revolutionary AeroTouch™ Technology and advanced personalized display deliver a perfectly close shave without sacrificing comfort. This press release features multimedia. View the full release here: https://www.businesswire.com/news/home/20260701842080/en/ Braun NEVO Shaver Oliver Grabes, Braun Head of Design, said: “At Braun, we set out to reimagine the shaving experience which led to the development of AeroTouch™ Shaving Technology, a cutting system engineered for ultra-low friction on the skin and high efficiency. This makes Braun NEVO our best shaver* setting a new standard for smooth skin.” Introducing the revolutionary world’s first AeroTouch™ Technology, featuring 250 diamond-sharp cutting edges and an exclusive Ultra gliding foil for a smooth g

Brenus Pharma Strengthens Its Governance With Designation of a New President and Appointment of Former Novo Nordisk EVP as Independent Member2.7.2026 08:00:00 CEST | Press release

Brenus Pharma, today announced key appointments to its board of directors. The company welcomes Eric DESSERTENNE, as President & Chairman of the board, succeeding co-founder Jacques GARDETTE, who will remain an active board member. Eric brings extensive experience in healthcare innovation and value creation, having notably led BIOCORP through its development and acquisition by Novo Nordisk. Brenus also appoints Camilla SYLVEST, as a second independent director, following the earlier addition of Diala EZZEDDINE a seasoned US-based biotech executive and entrepreneur. Camilla SYLVEST is an experienced pharmaceutical executive and global business leader, having spent nearly three decades at Novo Nordisk A/S, where she most recently served as Executive Vice President for Global Commercial Strategy, Corporate Communication and Sustainability. She currently serves on the Boards of Argenx SE, Getinge AB, and Zealand Pharma A/S, and has previously served on the Board of Danish Crown A/S and as

Access Advance and Alibaba Announce Alibaba's Expanded Participation in the VDP Pool2.7.2026 02:00:00 CEST | Press release

Access Advance LLC and Alibaba Group today announced that Alibaba has joined the Access Advance Video Distribution Patent Pool (VDP Pool) as a Licensee, securing a license to the pool's comprehensive coverage of HEVC, VVC, VP9, and AV1 codec technologies. The announcement marks a milestone in a multi-year collaboration between the two companies that spans the VVC Advance Patent Pool, where Alibaba participates as both a Licensor and Licensee, and the VDP Pool, where Alibaba joined as a Licensor in 2025. Alibaba's subsidiary Youku, one of China's leading streaming platforms, also joined the VDP Pool as a Licensee in 2025. Alibaba operates one of the world's most diverse video ecosystems, spanning a wide range of video-based services across e-commerce, entertainment, and digital media. As video has become central to how consumers shop, communicate, and access entertainment, the breadth of Alibaba's video operations reflects the kind of business model complexity the VDP Pool was designed

Vertex Announces US FDA Approval for Expanded Use of CASGEVY® for the Treatment of People Ages 2 Years and Older With Sickle Cell Disease or Transfusion-Dependent Beta Thalassemia2.7.2026 01:58:00 CEST | Press release

- First and only approved genetic therapy to treat children as young as 2 years for both severe sickle cell disease and transfusion-dependent beta thalassemia -- Approximately 5,500 additional children in the U.S. are now eligible for this established one-time therapy, expanding upon the prior FDA approval in people 12 years and older -- Regulatory review for label expansion underway in the Kingdom of Saudi Arabia and United Kingdom - Vertex Pharmaceuticals Incorporated (Nasdaq: VRTX) announced today that the U.S. Food and Drug Administration (FDA) has approved expanded use of CASGEVY® (exagamglogene autotemcel) for the treatment of people ages 2 years and older with either sickle cell disease (SCD) with recurrent vaso-occlusive crises (VOCs) or transfusion-dependent beta thalassemia (TDT). CASGEVY is the first approved genetic therapy indicated for children as young as 2 years for both SCD and TDT. “Just as we redefined what is possible in cystic fibrosis, our ambition is to transform

Andersen Global styrker sine kompetencer inden for skat og global mobilitet i Tyskland2.7.2026 00:13:00 CEST | Pressemeddelelse

Andersen Global styrker sin tilstedeværelse gennem en samarbejdsaftale med Lohr and Company (L+C), der er en erfaren skatterådgivningsvirksomhed, der leverer praktiske og fleksible løsninger inden for skattecompliance, internationale skatteforhold, global mobilitet og transfer pricing. L+C har hovedkontor i Tyskland og er også til stede i Østrig og rådgiver store multinationale selskaber, familieejede virksomheder, familievirksomheder, fonde og formuende privatpersoner. L+C blev grundlagt i 2001 og har specialiseret sig i global mobilitet, opkøb og fusioner, international skattelovgivning, rapportering mellem lande og transfer pricing, herunder rapportering i henhold til Pillar 2. Derudover bistår L+C sine kunder med trusts og fonde, skattecompliance, løn- og regnskabsadministration samt privatøkonomisk rådgivning. "Samarbejdet med Andersen Global er et vigtigt skridt i udvidelsen af vores internationale kompetencer og styrker den værdi, vi skaber for kunder, der navigerer i stadig mer

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