WRITTEN QUESTION E-1332/00

by Bart Staes (Verts/ALE) to the Commission

(27 April 2000)

Subject: Financial aid for sarcoidosis projects

Late last year a number of sarcoidosis patients created a website to provide information about their illness. The many contacts soon showed that there is a great need not only for information, but also for an umbrella organisation (a foundation)

to represent the interests of patients. This is because many people suffering from sarcoidosis have problems with what is in any case a difficult diagnosis of their illness. The European Sarcoidosis Foundation has now received the support of Dr Alexandre Vizel, professor in the medical faculty of the University of Kazan (Tartarstan) and head of the pulmonology section.

1. Is the Commission aware of the problems of sarcoidosis patients? If so, is it financing projects concerned with sarcoidosis?

2. Is the Commission prepared to give financial support to the European Sarcoidosis Foundation in view of the specific difficulties facing sarcoidosis patients? If so, in what way can this aid be given?

Answer given by Mr Byrne on behalf of the Commission

(13 June 2000)

1. The Commission is well aware of the problems of sarcoidosis patients. The Commission has been informed that the prevalence of the disease is less than five affected people per 10 000 in the Community and thus it is one of the 5 000 different kinds of diseases that fall within the general definition of rare disease. As the Community can provide a strong added value in the area of rare diseases, the Commission has proposed a comprehensive strategy based on three actions.

Pharmaceutical policy. Regulation (EC) No 141/2000 of the Parliament and of the Council of 16 December 1999 on orphan medicinal products(1) was recently adopted and it will provide incentives for research, development and placing on the market of designated orphan medicinal products (pharmaceutical products for rare diseases). A committee for orphan medicinal products is set up within the European agency for the evaluation of medicinal products. The Commission has recently nominated three members representing patients' organisations.

Public health policy. Within the framework for action in the field of public health, a programme of Community action on rare diseases (1999-2003) is currently being implemented by the Commission. Transnational collaboration of organisations of those directly or indirectly affected by rare diseases is one of the four actions to be implemented. The other actions concern the promotion of a European information network on rare diseases, training on rare diseases and monitoring of rare diseases.

Research policy. The fifth framework programme on research (Quality of life and management of living resources) provides for several areas in which diseases such as sarcoidosis are covered, in particular Activities of generic nature area 7 which explicitly mentions rare diseases, and key action 4 Environment and health.

2. The Commission is not currently funding any specific project on sarcoidosis, but this disease is addressed under the more general actions in the above areas. Sarcoidosis patients' organisations are eligible to take part in any of the abovementioned initiatives. This should be done following the specific rules defined for each of them (procedure defined by Regulation (EC) No 141/2000 for orphan medicinal products; reply to calls for proposals published in the Official journal for research and public health programmes).

(1) OJ L 18, 22.1.2000.