Professional Support Groups
Support to patients and families by the health, education and social services is important.
This page provides a list of groups, organised by country, providing a range of support services relevant to the NCLs.
Countries are also increasingly developing national strategies for rare diseases which will improve all aspects.
Europe
United Kingdom
- Batten Disease Professional Development Group
- 2009 Annnual Report of the Chief Medical Officer (pdf file) has a comprehensive overview on rare diseases in the UK from p.39. This includes statistics, individual portraits,
and a synopsis of the major elements of concern: prevention, screening, diagnostics, research, quality of life, management, treatment and cost issues. Six key actions are recommended:
1. Strengthen the network of reference centres for rare diseases to enable better coordination of specialist services, including the transition from paediatric to adult services
2. Ensure that adequate numbers of specialists are trained so that future service needs can be met
3. Appoint a National Clinical Director for rare diseases to oversee the development of clear standards and pathways for the treatment and surveillance of rare diseases, with national registers to support service planning and delivery as well as research
4. Strengthen research, including translational research with economic incentives, to develop and market medicines for the 'orphan diseases'
5. Raise public and professional awareness of this neglected group of diseases
6. Support international collaborative efforts to share information and resources for rare diseases
Finland
Norway
Sweden
