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Ergomed and PSR Orphan Experts, Ergomed’s rare disease specialist division, announce 2019 activities in support of Rare Disease Day®
London, UK, and Hoofddorp, The Netherlands – 28 February 2019: Ergomed plc (LSE: ERGO) (‘Ergomed’ or the ‘Company’), a specialised pharmaceutical services and drug development company, together with its rare disease subsidiary PSR Group BV (‘PSR Orphan Experts’), a specialised contract research organisation focusing on orphan drug development, today announced their support of this year’s Rare Disease Day® held on February 28th. Rare Disease Day helps to raise awareness of rare diseases and their impact on patients’ lives.
As part of Ergomed’s and PSR Orphan Experts’ commitment to the rare disease patient community, employees are participating in a variety of activities to “Show Their Rare”. From handing out posters and showing informative videos, to painting their faces in solidarity with rare disease patients for this year’s campaign, Ergomed and PSR Orphan Experts continue the tradition of building lasting and beneficial relationships to raise awareness year-round for rare diseases with the aim to help patients gain access to much needed treatments. Activities have also been organized around connecting with self-help groups and associations, holding discussions with students, organizers and sponsors and participating in hospital discussions on diagnostic and treatment opportunities for patients suffering from rare diseases. In Serbia, for example, as part of their Rare Disease Day activities, the office director will attend a high-level roundtable hosted by Serbia’s National Organization for Rare Diseases.
“All patients are entitled to the best possible care regardless of the rarity of their disease.” Commented Ivana Badnjarevic, President of the National Organization for Rare Diseases, Serbia (NORBS): “On this year’s Rare Disease Day we reaffirm our commitment to represent rare disease patients by advocating for them amongst multilateral stakeholders – Ministries of Health and Social Welfare, the Serbian NHIF, media, scientists, healthcare professionals and pharmaceutical industry representatives in the form of an informative and constructive roundtable.”
In financial support of Rare Disease Day, Ergomed and PSR Orphan Experts have organized an array of charity and fundraising events. Today, the Ergomed Frankfurt office will hold a charity bake bazaar with all funds being donated to the Alliance for Chronic Rare Diseases – ACHSE (www.achse-online.de). The Guildford office organized a raffle last week and gifted the raised money to their charity partner, The Fountain Centre (http://www.fountaincentre.org/). In addition, Ergomed Zagreb office organized a presentation session with their national organisation, Rare Diseases Croatia, to ensure that all employees are aware of rare diseases in local society and the work that the organisation is doing. As is tradition, PSR Orphan Experts supports a local rare disease organisation by hosting a beach volleyball tournament. This year’s proceeds will help support the Marshall-Smith syndrome (MSS) family day in September 2019 (www.marshallsmith.org). MSS is an ultra-rare disease characterized by unusually quick physical growth and bone development (maturation), usually starting before birth. The exact cause of Marshall-Smith Syndrome is unknown.
“Despite general acknowledgement of the benefits derived from innovative therapies, patients who suffer from rare diseases continue to face challenges in receiving accurate diagnosis and obtaining timely access to suitable treatment options,” said Christa van Kan, Managing Director of PSR Orphan Experts. “Therefore, we are proud to support Marshall-Smith syndrome (MSS) family day as this year’s fundraiser recipient. Once considered a childhood condition, with most children not surviving infancy, modern care has made it possible for children with MSS to survive until early adulthood. It is our pleasure to support this family day and we look forward to a weekend of renewed hope and community.”
Creating and executing an orphan drug development programme presents some of the highest hurdles in medicine
Constant growth in orphan drug development can be seen over the past 10 years. Despite this trend, the majority of patients who suffer from the more than 7,000 rare diseases, of which many are genetic, remain underserved. Due to the rarity, heterogeneity and complexity of patient management associated with rare conditions, creating and executing an orphan drug development programme continues to be met with seemingly insurmountable hurdles. However, in recent years, there has been rapid growth in the demand for trials in rare and orphan indications resulting from legislation in both the US and EU that have established incentives to support research in these areas. Such legislation makes it more financially viable to support the development of both precision and preventative treatment options.
Dr. Miroslav Reljanovic, Executive Chairman of Ergomed, said: “It is our mission to make a significant innovative contribution to the availability of new treatments for rare disease patients. Orphan drugs require specialized development skills due to the limited patients pool, severity of the disease and often acute nature of symptoms. To answer this need, Ergomed and PSR Orphan Experts have joined forces to establish an expert global orphan drug development team that ensure drug developers are able to implement patient driven solutions in their clinical trials.”
|Ergomed plc||Tel: +44 (0) 1483 503205|
|Dr. Miroslav Reljanovic (Executive Chairman)|
|PSR Orphan Experts||Tel: +31 (0) 23 303 6900|
|Christa van Kan (Managing Director PSR)|
|Consilium Strategic Communications – for UK enquiries||Tel: +44 (0) 20 3709 5700|
|Chris Gardner / Mary-Jane Elliott
Matthew Neal / Olivia Manser
|MC Services – for Continental European enquiries||Tel: +49 211 5292 5222|
Ergomed provides specialist services to the pharmaceutical industry spanning all phases of clinical development, post-approval pharmacovigilance and medical information. Ergomed’s fast-growing, profitable services offering encompasses a complete suite of specialist pharmacovigilance solutions, integrated under the PrimeVigilance brand, in addition to a full range of high quality contract research and trial management services (CRO). Leveraging its CRO expertise, Ergomed also has a drug development portfolio of co-development partnerships and wholly-owned programmes. For further information, visit: http://ergomedplc.com.
About PSR Orphan Experts
PSR Orphan Experts, as a subsidiary of Ergomed, is one of the very few companies exclusively focused in orphan disease drug development and recognised as a leading expert in assisting biotech and pharma companies in the rare disease niche. It is our mission to make a significant innovative contribution to the availability of new treatments for rare disease patients.
The Company is a full service specialist orphan drug CRO with a vast experience of conducting complex trials in designated rare indications. Through its Site Management model and Study Physician Team Support, that allows smooth interaction of the sites and patient organisations and advocacy groups, the Company has shown that it can locate and support sites in studies of ultra-rare diseases for which recruitment can be highly problematic. PSR Orphan Experts has successfully prepared EMA and FDA Orphan Drug Designation applications and follow-up regulatory interactions as well as established links with physician networks, key opinion leaders, other government bodies and patient groups. Besides outsourced project solutions, PSR Orphan Experts provides insourced staffing solutions (orphan drug teams), temporary & permanent staffing, interim management solutions as well as training / coaching career programs. https://www.orphandrugexperts.com/
About Rare Disease Day®
Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008.
Get involved on social media: #ShowYourRare #RareDiseaseDay
From a regulatory point of view, a disease or disorder is considered to be rare, if it affects fewer than 200,000 people (US) or no more than 5 in 10,000 citizens (EU). At first glance, these figures may indicate that the number of people affected is not particularly high, but today with approximately 7,000 different disorders and more than 300 million people affected worldwide – of which 50% are children. Rare diseases pose a major medical challenge.