Federal Thyroid Cancer Association

The Bundesverband Schilddrüsenkrebs – Ohne Schilddrüse leben e. V. (rendered in English as the Federal Thyroid Cancer Association) is a nationwide German self-help organisation for thyroid patients, with a particular focus on people living with thyroid cancer. Registered as a non-profit association (eingetragener Verein), it is headquartered in Berlin and operates primarily in the German-speaking region, with cooperation extending to self-help groups in Austria and Switzerland. Its stated purpose is to represent the interests of thyroid patients and to promote public health by providing information and practical help so that people affected by thyroid disease can cope better with their condition. It also maintains a specialist dialogue with other interest groups in health policy. The association in its current form was founded on 13 April 2013 in Berlin, but its roots reach back to a patient initiative started in 1999. From that initiative the association "Ohne Schilddrüse leben e. V." was founded in 2005, and in 2013 it was renamed Bundesverband Schilddrüsenkrebs – Ohne Schilddrüse leben e. V. The reform was a response to growing demand for information, advice and support. Governance is volunteer-based. The board is elected for a two-year term and works on an honorary basis. The association has ordinary, active and supporting members; supporting membership is available from an annual contribution of five euros, and the level of the individual membership fee is left to each member's discretion. Among its bodies are a members' advisory council, which advises and monitors the federal board, and a Scientific Advisory Board responsible for medical matters, comprising eight physicians from various disciplines at university clinics and institutes, including the surgeon Henning Dralle, director of the university clinic of the Martin Luther University Halle-Wittenberg. Financing comes from third-party funds, project grants from health insurers, private donations and membership fees. In 2022 the Stiftung Deutsche Krebshilfe (German Cancer Aid) provided the largest single financial support with a lump-sum grant of 193,000 euros, which already accounted for around 73 percent of total income that year. A central element of the association's information work is its internet forum, which recorded 637,000 visits in 2022, or at least 2,000 visits per day. It also distributes brochures and current leaflets free of charge, supplemented by the German Cancer Aid's free specialist information series "Die Blauen Ratgeber". The association maintains a liaison office in the Haus der Krebs-Selbsthilfe in Bonn, a facility funded by German Cancer Aid that houses ten nationwide cooperating self-help organisations. Its internet forum has also led to cooperation with regional German-speaking self-help groups in Switzerland and Austria.

The origins of the Bundesverband Schilddrüsenkrebs lie in a patient initiative founded in 1999. From this initiative, the association "Ohne Schilddrüse leben e. V." was established in 2005. In its current form, the organisation was founded on 13 April 2013 in Berlin and renamed Bundesverband Schilddrüsenkrebs – Ohne Schilddrüse leben e. V. The reform was undertaken in response to rising demand for information, counselling and support among thyroid patients. The association is a nationwide self-help organisation of thyroid patients and advocates for the interests of thyroid patients, in particular thyroid cancer patients. Its purpose also includes promoting public health by providing information and help for people with thyroid disease so they can better cope with their condition, and it conducts specialist dialogue with other interest representatives in health policy. Governance is carried out on a voluntary basis. The board is elected for a two-year term. The association's members include ordinary, active and supporting members; supporting membership is possible from an annual contribution of five euros, and the amount of the membership fee is at the discretion of the individual member. Among the association's bodies is the members' advisory council, whose task is to advise and monitor the federal board. The Scientific Advisory Board is responsible for medical matters and advises the board on medical questions relating to the thyroid; it comprises eight physicians from various disciplines at university clinics and institutes, including Henning Dralle, director of the university clinic of the Martin Luther University Halle-Wittenberg. Financing is provided through third-party funds, project grants from health insurers, private donations and membership fees. In 2022, the Stiftung Deutsche Krebshilfe provided the largest financial support with a lump-sum grant of 193,000 euros; the share of Cancer Aid funding in total income already amounted to around 73 percent in 2022. A focus of the association's information work is its internet forum, which recorded 637,000 visits in 2022, or at least 2,000 visits per day. Its information work also includes the free distribution of brochures and current leaflets, supplemented by the German Cancer Aid's free specialist information series "Die Blauen Ratgeber". The association also maintains a liaison office in the Haus der Krebs-Selbsthilfe in Bonn, funded by German Cancer Aid, which houses ten nationwide cooperating self-help organisations. The internet forum has led to cooperation with regional German-speaking self-help groups in Switzerland and Austria.

• 2022

  Internet forum recorded 637,000 visits; German Cancer Aid provided a lump-sum grant of 193,000 euros, around 73 percent of total income.

• 2013

  On 13 April 2013, the organisation was founded in its current form in Berlin and renamed Bundesverband Schilddrüsenkrebs – Ohne Schilddrüse leben e. V.

• 2005

  Association "Ohne Schilddrüse leben e. V." founded from the patient initiative.

• 1999

  Patient initiative founded, forming the origin of the later association.

Nationwide German self-help and advocacy organisation for thyroid patients, especially thyroid cancer patients, funded largely by German Cancer Aid and health-insurer project grants.

• Internet forum

  Central information and exchange platform; 637,000 visits in 2022, at least 2,000 per day.

• Brochures and leaflets

  Free distribution of brochures and current leaflets, supplemented by German Cancer Aid's "Die Blauen Ratgeber" series.

• Counselling and support

  Information, advice and support for thyroid patients and their families.

1. 1Federal Thyroid Cancer Association – Wikidatawikidata.org
2. 2Bundesverband Schilddrüsenkrebs – Wikipedia (German)de.wikipedia.org
3. 3Bundesverband Schilddrüsenkrebs official websitesd-krebs.de