Federal Association of Small People and Their Families

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Logo of the Federal Association of Short People and Their Families

The Federal Association of Small People and Their Families eV (BKMF eV) is a German organization in the field of health-related, family-oriented self-help. He advocates the interests and concerns of short people and their families.

The association currently (2013) has over 3,500 members. Since there are a multitude of causes for short stature, the spectrum of diagnoses among the members is wide spread.

history

The club's origins go back to the early 1980s. At this time, parents of small children began to meet with the aim of networking with one another and exchanging experiences and information. The initiative came from Ruzena and Karl-Heinz Klingebiel , as well as from the psychologist Ortrun Schott .

The association was founded on February 16, 1988, initially as the "parent group of small children eV". In the same year, the first small stature forum was held in Mauloff. The first advice and office was set up in Bremen in 1991, staffed by a full-time administrative specialist and management.

In a joint initiative with the Association of Small People (VKM), a nationwide ban on throwing dwarfs was achieved in 1992. In May there was an international small stature forum in Bremen. A year later, the association was renamed "Federal Association of Small People and Their Families eV" based on a membership resolution.

Successes in cooperation with other organizations and initiatives included the participation of the BKMF in the founding of the German Disability Council, as well as the Alliance Chronic Rare Diseases (ACHSE eV). The importance of the association and the associated services were also expressed in 2006 Recognition in the form of the award of the Federal Cross of Merit for the founding chairman Karl-Heinz Klingebiel.

In 2007 the German Center for Short Stature Issues was opened. Part of it is u. a. a trial apartment suitable for short stature. Those affected can test various technical aids in use there in order to decide whether they are helpful for them.

The goal of a future-oriented approach is being pursued with the “Generation Change” project in 2013. The young, short adults who had been part of the association since childhood were increasingly involved in responsible positions. Patricia Carl has been the new chairwoman of the BKMF eV since March 17, 2013. She replaced Doris Michel, who previously held this position for 12 years.

Goals and mission

According to its statutes, the association is exclusively committed to the interests of short people, always with the idea of ​​self-help. From this result u. a. the following tasks:

  • Promotion of members through information, advice, support and strengthening in all matters related to short stature
  • Psychosocial strengthening of those affected
  • Promotion of integration into society
  • Breaking down existing prejudices
  • Bundling, systematising and dissemination of short stature-specific knowledge

In order to achieve this, there is a nationwide advisory network consisting of full-time employees in the advisory and office in Bremen and volunteer advisors from the eight regional associations.

Structure of the association

In addition to the structure required by association law, the association regulates further internal organization in its statutes to achieve the purpose and tasks specified therein. Here it is also clearly regulated that the association work and the support of the members must take place primarily in the regional associations, working groups and working groups.

Regional associations

Within the federal association, there are 8 regional associations, which are free to subdivide themselves regionally. Some of these also have the status of an association. Events are also held locally by the regional associations.

Working groups

There are currently a total of eight working groups for the exchange of information among those affected. There is one for each of the short stature forms achondroplasia , diastrophic dysplasia , hypochondroplasia , phosphate diabetes , and spondyloepiphyseal dysplasia congentina . There is also a working group that covers the Silver-Russell syndrome , Small for Gestational Age and growth hormone deficiency, as well as a working group that looks after tricho-rhino-phalangia syndromes and multiple hereditary exostoses . The different working groups reflect the already mentioned wide range of different diagnoses of the members.

However, there is not a working group for every form of diagnosis, as some diseases are so rare that there are fewer than 10 people affected throughout Germany. Here, however, the focus is on the contacts with one another, for the aforementioned exchange of experience and knowledge gain.

Working groups

There are three working groups. "Young people", "parents" and "adults of short stature", which are supposed to ensure care based on the respective phase of life.

Advisory Boards

Advisory boards can be appointed by the board to provide technical and scientific advice. Currently, these are the Scientific Advisory Board, which actively participates in the work on the publications or gives advice when information material should be updated due to newer, scientific findings and the Council of Elders.

Memberships

The Federal Association of Short People and Their Families is u. a. Member of the Federal Self-Help Working Group , the Alliance of Chronic Rare Diseases , the European Organization for Rare Diseases (EURORDIS), the German Red Cross (Bremen State Association, as a cooperating member) and the German Disability Council .

Publications

Four times a year the members' magazine “Matters Kleinwuchs” appears with the latest internal information about the association, experience reports, articles about new research findings or the work of self-help in general. There is great commitment in the publication of numerous information materials such as the "initial information on the subject of short stature", on individual clinical pictures (including achondroplasia , hypochondroplasia, etc.) as well as the "yellow sheets", the compact, medically and scientifically founded, generally understandable explanations of individual Provide diagnostic fields. There are also purely scientific publications.

The aim is not only to provide information to those affected and their relatives, but also to specialist staff such as doctors or physiotherapists, which is why we always cooperate with specialists and publications are created in cooperation with the scientific advisory board of the association.

Projects and seminars

The association constantly carries out various projects related to short stature . For example, from 1998 onwards, the research project on the professional situation of short people with funding from the Federal Ministry of Labor and Social Affairs or the traveling exhibition “Perspectives” from 2008 to 2012.

In addition to the project work, seminars for young people, volunteer advisors or symposia and workshops for specialists are held. The largest event of its kind is the annual small stature forum on Ascension Day with up to 600 participants in Hohenroda .

Web links

Individual evidence

  1. ↑ Carl, Patricia: My experience in self-help. In: My short stature life. 6th revised edition, Bremen 2012, Federal Association of Small People and Their Families (BKMF) eV, ISBN 978-3-00-041924-9 , p. 10 ff.
  2. ^ Chronicle - 25 years of family-oriented health self-help. Bremen 2012, Federal Association of Short People and Their Families (BKMF) eV, ISBN 978-3-00-041067-3 , p. 9 ff.
  3. ^ Chronicle - 25 years of family-oriented health self-help. Bremen 2012, Federal Association of Short People and Their Families (BKMF) eV, ISBN 978-3-00-041067-3 , p. 56 ff.
  4. ^ Chronicle - 25 years of family-oriented health self-help. Bremen 2012, Federal Association of Short People and Their Families (BKMF) eV, ISBN 978-3-00-041067-3 , p. 58 ff.
  5. ^ Senate Chancellery - press release with photo of the Federal Cross of Merit for Karl-Heinz Klingebiel. Free Hanseatic City of Bremen, Senate Press Office, September 4, 2006, accessed on July 25, 2013
  6. ↑ Tasks and goals. ( Memento from January 15, 2017 in the Internet Archive ) Federal Association of Short People and Their Families, accessed on July 11, 2013
  7. ↑ affects short stature. Edition 2/2013, p. 10
  8. ^ Chronicle - 25 years of family-oriented health self-help. Bremen 2012, Federal Association of Short People and Their Families (BKMF) eV, ISBN 978-3-00-041067-3 , p. 151
  9. ↑ Statutes of the Federal Association of Small People and Their Families (BKMF), §2 ( Memento from March 4, 2016 in the Internet Archive ) (PDF file; 80 kB) March 19, 2011, accessed on July 25, 2013
  10. ↑ Kleinwuchs Gelbes Blatt No. 1a “Achondroplasie”, Bremen March 2007, Federal Association of Kleinwüchsige Menschen und their Families (BKMF) eV, p. 8
  11. ↑ Annual Review 2012. Düsseldorf 2012, BAG Selbsthilfe eV, ISBN 978-389381-123-6 , p. 55
  12. ↑ Statutes of the Federal Association of Short People and Their Families (BKMF), §§ 7 ff. ( Memento from March 4, 2016 in the Internet Archive ) (PDF file; 80 kB) March 19, 2011