Welcome  
Steering Committee Orphan Drugs
Background
The European Parliament and the Council of the European Union have shown clear interest in rare diseases during the last years. The adoption of the Programme of Community Action on Rare Diseases (1999 to 2003) and the Regulation No. 141/2000 on Orphan medicinal Products are examples of the European interest.
Advice from Dutch Advisory Council on Health Research
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 for at least four years. The committee is an independent organisation and consists of ten members and one observer. 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.
After a period of four years the Minister will decide whether the steering committee will exist for a longer period of time. The ministry of VWS has made available an annual budget for 3 years of maximal Euro 450,000 for the committee.
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 committee organised an invitational conference in November 2001 to discuss with fifty dedicated participants the main problems concerning development and orphan drugs and care for patients with a rare disease. Subsequently, the committee finalised its plans and introduced them at a symposium in January 2002.
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.
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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