Alliance of Chronic Rare Diseases
The non-profit Alliance of Chronic Rare Diseases (ACHSE) e. V. is a network by and for people with (chronic) rare diseases and their relatives. 120 patient organizations (as of 2015) have come together in it.
Eva Luise Köhler , wife of the then Federal President Horst Köhler , has been ACHSE's patron since 2005 .
ACHSE is a member of the BAG Selbsthilfe, the LAG Selbsthilfe NRW, the LV Selbsthilfe Berlin and the European umbrella association of patient organizations for people with rare diseases EURORDIS (European Organization for Rare Diseases).
aims
ACHSE sees itself as a network that helps people to help themselves . Your goals are:
- increase the general knowledge of rare diseases;
- to promote the work of existing self-help organizations;
- to advise affected people and their relatives and to network with self-help organizations;
- to represent the interests of the sick politically, e.g. B. through comments on legislative changes;
- to promote better education of doctors and therapists about symptoms , diagnosis , course and therapy of rare diseases and to promote the exchange with specialists;
- promote collaboration between doctors, scientists, politicians, the health industry and self-help based on transparency and independence;
- to promote research into rare diseases and the development of drugs (so-called “orphan drugs”) for their treatment and other therapeutic options.
consultation
The counseling service aims to help those affected by the search for information related to the disease, the establishment of contacts to self-help organizations or the preparation of visits to the doctor. In addition, an ACHSE pilot based at the Charité Berlin also offers doctors seeking advice information and research assistance on rare diseases.
Activities of ACHSE
- The National Action Alliance for People with Rare Diseases (NAMSE) was founded in 2010 and jointly coordinated by the Federal Ministry of Health (BMG), the Federal Ministry of Education and Research (BMBF) and ACHSE. 25 top and umbrella associations in the health sector have joined the alliance. His task was initially to develop a national action plan for people with rare diseases on the basis of existing structures and European experience. In it, the alliance formulated 52 measures aimed at improving the care of patients with rare diseases in Germany. Particular emphasis was placed on the fields of information management, diagnosis, care, especially centers and networks, and research. The action plan was presented to the public on August 28, 2013 by Federal Health Minister Daniel Bahr. It is now the task of NAMSE to accompany the implementation of the measures and to drive them forward.
- For its member organizations, ACHSE offers events such as conferences, specialist events and also seminars and workshops to support and qualify the organizations and their patient representatives. In addition to the face-to-face events, the Self-Help Academy also offers an online platform. In addition to video recordings, all presentations and materials from the ACHSE seminars as well as additional information are available there to ACHSE members.
- The Eva Luise Köhler Research Prize , endowed with 50,000 euros , is awarded annually by the Eva Luise and Horst Köhler Foundation in cooperation with ACHSE e. V. awarded for the implementation or start-up financing of a research project in the field of rare diseases, which makes an important contribution to improving diagnostics, prevention, therapy, basic resources or research into causes; Cross-disease knowledge or strong patient orientation are particularly important.
- On Rare Disease Day (Rare Disease Day), the last day of February, people gather around the world to do together on issues and problems of the so-called "orphan medicine" alert. The ACHSE member associations, the Centers for Rare Diseases and committed doctors organize city activities, such as specialist conferences, cultural evenings and high-profile information events. ACHSE coordinates and promotes the campaigns.