Why Rare Disease Focus?

People living with a rare disease are at the center of everything we do at PSR. We focus on the patient, and how to make a positive impact on the lives of these patients with a rare disease. Our passion to work in the clinical research industry is to contribute to better health and effective treatments for patients suffering from serious diseases for which often no treatment exists. That is why we are in this business. Through different ways we try to help these patients and make their voices heard. For example, we organize fundraising events, we aim to lower the burden of rare disease patients in clinical trials and we have an active Patient Organization Advisory Board.

Why Rare Disease Focus?

People living with a rare disease are at the center of everything we do at PSR. We focus on the patient, and how to make a positive impact on the lives of these patients with a rare disease. Our passion to work in the clinical research industry is to contribute to better health and effective treatments for patients suffering from serious diseases for which often no treatment exists. That is why we are in this business. Through different ways we try to help these patients and make their voices heard. For example, we organize fundraising events, we aim to lower the burden of rare disease patients in clinical trials and we have an active Patient Organization Advisory Board.

Lowering patient burden

There is a clear need to engage and involve patients in clinical trials more actively. At PSR, we aim to improve the success rate of orphan drug trials by lowering the burden of participating patients (and their families) through out of the box innovative solutions. Experience has shown that improved outcomes for clinical trials and enhancing patient and or family/caregivers experience go hand in hand.
To achieve this, we’ve developed a wide variety of tools which we can pick and choose from, depending on the specific needs of a trial or a patient group. For example PSR takes care of travel arrangement, offers home care services and interpreters, and work closely together with patient groups.

Fundraising events

At PSR we want to contribute to society. We try to raise awareness and money to help people with rare diseases and contribute to research, in various ways. In the last few years, the PSR team participated in different fund raising events in the Netherlands.

For example, PSR swam 2000 meters in the canals of Amsterdam during the ALS City Swim. With this event, money was raised for the Dutch ALS foundation to finance various projects, particularly for research. Also, we participated several times in a special mini-triathlon, where the PSR team swam, cycled and ran together with children with a neuro muscular disease, to raise money for the Spieren voor Spieren foundation.

PSR also organizes its own charity events, where we raise awareness and money, and thereby contribute to a better quality of life for children and families who suffer from metabolic diseases.

Patient Organization Advisory Board

PSR launched a Patient Organization Advisory Board based on the growing recognition – both within the biopharmaceutical industry and regulatory agencies – that patients need a greater voice in the development of new medicines. Rare disease patients are often experts in 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 offer patients and their representatives more opportunities to provide patient input into the clinical-stage drug development planning. The advisory board consists 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.

“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.”

Planetenweg 5
2132 HN Hoofddorp
The Netherlands
Tel: +31-23-55 63 220
Fax: +31-23-55 63 230
Email: info@psr-group.com
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