Alliance for Chronic Rare Diseases

The Allianz Chronischer Seltener Erkrankungen (ACHSE) e.V. — rendered in English as the Alliance for Chronic Rare Diseases — is a German non-profit umbrella organisation and patient-advocacy network based in Berlin. Founded in 2004, it describes itself as the voice of roughly 4 million people in Germany living with chronic rare diseases. It is a registered association (eingetragener Verein) recognised as charitable, democratically organised and built on the principles of self-help. ACHSE functions as a Dachverband — an umbrella federation — for patient self-help organisations. By 2025 more than 140 self-help organisations were members, and its wider network includes interested groups, foundations and actors from healthcare, science and research. Its stated goals are to broaden general knowledge about rare diseases, strengthen existing self-help organisations, advise affected people and their relatives and connect them with patient organisations, represent patients' interests politically (for example through statements on legislative changes), improve the education of physicians and therapists about symptoms, diagnosis, course and therapy of rare diseases, promote cooperation between doctors, scientists, politicians, the health industry and self-help on a basis of transparency and independence, and advance research into rare diseases and the development of orphan drugs and other therapies. ACHSE offers free, competent counselling for those affected, helping them find disease-related information, make contact with self-help organisations and prepare for doctor visits; an ACHSE patient guide based at the Charité in Berlin also provides information and research support to physicians. For its member organisations it runs conferences, specialist events, seminars and workshops, and its Self-Help Academy provides an online platform with recordings, presentations and materials. ACHSE is a member of BAG Selbsthilfe, LAG Selbsthilfe NRW, LV Selbsthilfe Berlin and the European rare-disease umbrella EURORDIS. Since 2005 Eva Luise Köhler, former First Lady of Germany, has been an active patron and advocate of ACHSE. The association is governed by an honorary board whose members are mostly themselves affected or parents of affected people. It is financed through limited public funds supplemented by corporate support and private donations, and it commits to the transparency guidelines of BAG Selbsthilfe, publishing self-declarations, financial reports and activity reports. ACHSE co-coordinates the National Action Alliance for People with Rare Diseases (NAMSE) together with German federal ministries, and it coordinates and promotes activities around Rare Disease Day at the end of February.

The Allianz Chronischer Seltener Erkrankungen (ACHSE) e.V. was founded in 2004 as a German umbrella organisation for people with chronic rare diseases and their relatives. From the outset it was conceived as a network of and for affected people, organised democratically and following the principles of self-help. It is a registered association (eingetragener Verein) recognised as charitable. ACHSE grew into the central federation of rare-disease patient organisations in Germany. By 2015 it counted 120 patient organisations among its members; by 2025 the figure had risen to more than 140 self-help organisations, with a wider network that also includes interested groups, foundations and actors from healthcare, science and research. Since 2005 Eva Luise Köhler, wife of the then German Federal President Horst Köhler, has held the patronage of ACHSE and has been an active advocate for people with rare diseases. A defining chapter in ACHSE's history is its role in the National Action Alliance for People with Rare Diseases (NAMSE), founded in 2010 and jointly coordinated by the Federal Ministry of Health (BMG), the Federal Ministry of Education and Research (BMBF) and ACHSE. Twenty-five leading and umbrella associations from the healthcare sector joined the alliance. Its initial task was to draw on existing structures and European experience to develop a national action plan for people with rare diseases. The alliance formulated 52 measures to improve care for patients with rare diseases in Germany, with particular emphasis on information management, diagnosis, care — especially centres and networks — and research. The action plan was presented to the public on 28 August 2013 by Federal Health Minister Daniel Bahr. NAMSE's subsequent task has been to accompany and drive forward the implementation of these measures. Alongside its advocacy work, ACHSE developed a broad service portfolio. Its counselling service helps affected people find disease-related information, make contact with self-help organisations and prepare for doctor visits, while an ACHSE patient guide based at the Charité in Berlin also offers information and research assistance to physicians. For its member organisations ACHSE organises conferences, specialist events, seminars and workshops, and its Self-Help Academy provides an online platform where members can access video recordings, presentations and materials from ACHSE seminars as well as additional information. ACHSE is embedded in wider self-help and rare-disease structures: it is a member of BAG Selbsthilfe, LAG Selbsthilfe NRW, LV Selbsthilfe Berlin and the European umbrella organisation EURORDIS (European Organisation for Rare Diseases). It also cooperates with the Eva Luise and Horst Köhler Foundation to award the Eva Luise Köhler Research Prize, endowed with 50,000 euros and granted annually to support a research project in the field of rare diseases that contributes to improving diagnostics, prevention, therapy, basic resources or research into causes, with particular weight given to cross-disease insights or strong patient orientation. Each year ACHSE coordinates and publicises activities around Rare Disease Day, held on the last day of February, when people worldwide draw attention to the concerns of the so-called 'orphans of medicine'. Financially, ACHSE relies on limited public funds supplemented by corporate support and private donations. To meet transparency requirements, ACHSE and its members have committed to the guidelines of BAG Selbsthilfe — the 'Leitsätze der Selbsthilfe' adopted by BAG Selbsthilfe and the Paritätischer Wohlfahrtsverband on 30 April 2005 — in their respective current versions, publishing self-declarations, financial reports, activity reports and information on cooperation with industry. The association is governed by an honorary board whose members are mostly themselves affected or parents of affected people.

• 2025

  More than 140 self-help organisations are members of ACHSE.

• 2015

  120 patient organisations are members of ACHSE.

• 2013

  National action plan with 52 measures presented to the public by Federal Health Minister Daniel Bahr on 28 August 2013.

• 2010

  National Action Alliance for People with Rare Diseases (NAMSE) founded, co-coordinated by BMG, BMBF and ACHSE.

• 2005

  Eva Luise Köhler takes on the patronage of ACHSE.

• 2005

  BAG Selbsthilfe and Paritätischer Wohlfahrtsverband adopt the self-help guidelines (30 April 2005) that ACHSE commits to.

• 2004

  ACHSE e.V. founded as a German umbrella organisation for people with chronic rare diseases.

Germany's central umbrella alliance and political voice for people with chronic rare diseases, combining patient self-help, counselling, research promotion and advocacy.

• Patient counselling service

  Free counselling helping affected people find disease-related information, connect with self-help organisations and prepare for doctor visits.

• ACHSE patient guide at the Charité Berlin

  Provides information and research assistance on rare diseases to physicians.

• Self-Help Academy online platform

  Online platform with video recordings, presentations and materials from ACHSE seminars for members.

• Eva Luise Köhler Research Prize

  Annual prize endowed with 50,000 euros, awarded with the Eva Luise and Horst Köhler Foundation for a rare-disease research project.

1. 1ACHSE Online - ACHSE e.V.achse-online.de
2. 2Über uns - ACHSE e.V.achse-online.de
3. 3Vorstand - ACHSE e.V.achse-online.de
4. 4Transparenz - ACHSE e.V.achse-online.de
5. 5Alliance for Chronic Rare Diseases - Wikidatawikidata.org
6. 6Allianz Chronischer Seltener Erkrankungen - Wikipedia (German)de.wikipedia.org