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Two ODD-support grants awarded to DNage and to-BBB technologies
To further stimulate the development of orphan drugs, the Dutch Steering Committee on Orphan Drugs supports Dutch pharmaceutical Small and Medium-sized Enterprises (SME), public and non-profit organisations with a small subsidy for the costs of writing and submitting the Orphan Designation Dossier (ODD) to the EMA. The first two Orphan Designation Dossier (ODD)-support grants have been awarded to two small yet promising Dutch bio-pharmaceutical companies: DNage and to-BBB technologies. The ODD-support scheme is an initiative of the Dutch Steering Committee on Orphan Drugs and is executed by the Netherlands Organisation for Health Research & Development ZonMw. Read press release
Steering Committee Orphan Drugs
Background
The Minister of Health, Welfare and Sport (VWS) asked the Dutch Advisory Council on Health Research (RGO) in 1997 to give her advice on the co-ordination, priority and stimulation of research in The Netherlands in respect to orphan drugs. The RGO gave the advice in 1998 to build a national structure on orphan drugs.
Stuurgroep Weesgeneesmiddelen
The ‘Stuurgroep Weesgeneesmiddelen’ (Steering Committee Orphan Drugs) was appointed by the Minister of VWS in April 2001. The committee is an independent organisation and consists of ten members and two observers. The members are representatives of umbrella organisations for patients and for pharmaceutical companies, physicians and a hospital pharmacist, scientists, a representative of the Dutch medicine evaluation board and a representative of the Dutch health insurances board. The secretariat is situated at the research organisation ZonMw in The Hague.
Mission
The steering committee has the mission to encourage the development of orphan drugs and to improve the situation of patients with a rare disease, especially to strengthen the transfer of information on rare diseases.
Four themes
The plans of the steering committee can be summarised in four themes.
Desk
The committee collects information on rare diseases and orphan drugs in The Netherlands and functions as an information centre, also on the internet.
Booster
The committee wants to develop a new research programme on rare diseases and will give more publicity to the European funding programmes. Furthermore, the committee wants to stimulate voluntary registrations of patients with a rare disease.
Architect
The committee will investigate the existing models for diagnosis and treatment of rare diseases in The Netherlands and abroad and will encourage those care models that function well. The second part of the architect function includes improving procedures to get a non-registered drug available for a rare disease.
Brainpower
There are a lot of ethical and social problems concerning orphan drugs. The committee wants to encourage debate on orphan drugs in order to improve the climate of diagnostics and treatment of rare diseases.
More information
More information is present in our English brochure. You can download the brochure from the website or you can ask for a copy at the secretariat.
For more information you can download our corporate brochure:
English brochure
International Collaboration
The Steering Committee Orphan Drugs encourages international collaboration. Please do not hesitate to contact us, when you would like to have more information.
Contact
Secretariat Steering Committee Orphan Drugs
ZonMw Attn: Dr. Sonja van Weely & Drs.Jolanda Huizer
PO Box 93245 2509 AE The Hague The Netherlands
Visiting address
Laan van Nieuw Oost Indië 334 2593 CE The Hague The Netherlands
Telephone
+31- 70- 349 5220/ 349 52 57 / 349 5111
Fax
+31- 70- 349 5387
E-mail: wgm@zonmw.nl
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