Federal Association for Children with Heart Disease
The Bundesverband Herzkranke Kinder eV (BVHK) is based in Aachen . He cooperates with clinics, doctors and other institutions and represents the interests of those affected with congenital heart defects at all ages. In Germany, it is the coordination point for self-help and the contact point for parents and patients seeking advice. The nationwide networked member associations and parents' initiatives accompany the families concerned, support the exchange with one another and offer local assistance. The BVHK receives technical support from the medical advisory board, which includes well-known pediatric cardiologists and pediatric heart surgeons from all over Germany.
The association is recognized as a non-profit organization and has been awarded the DZI donation seal .
The patron of the association is Katharina Bauer (pole vaulter), as further sponsors and "ambassadors", cabaret artist Christoph Sieber , Christoph Biemann (known as "Christoph" from the show with the mouse ), Wolf von Lojewski and Gisela Manderla (Member of the Bundestag) support the work of Association.
History of origin
The association was founded in 1993 to network the 27 regional parenting initiatives and 5 regional groups and to represent them nationwide with one vote.
Association structure and organs
The voluntary board currently consists of 7 affected parents who belong to parenting initiatives from all over Germany.
The general assembly is the supreme body and is convened twice a year.
In 2018 the income was € 759,161 and the expenditure was € 439,104.
Goals and demands
The goals and demands of the association are:
- Provide contact persons in self-help, clinic and aftercare
- Support research in pediatric cardiology
- Establish family-oriented rehabilitation (FOR)
- Organize sports and encounters (riding and sailing week) as well as nationwide children's heart sports groups
- Provide social legal and psycho-social help
- Education and public relations work on "Living with a congenital heart defect"
- Create overnight accommodation for parents close to the clinic
- Doctor-parent-patient seminars and events on the "Day of the Child with Heart Disease"
- Achieve improvements in health policy
- Promote the integration of those affected (kindergarten, school, job, sport, etc.)
What has been achieved so far?
The BVHK has been actively and successfully involved in the following projects:
- As an accredited patient representative of the joint federal committee (G-BA):
- Application for mandatory nationwide pulse oximetry screening (approved by the G-BA on November 24, 2016 and entered into force at the beginning of 2017)
- Application for guidelines on the structure of pediatric cardiac surgery (new application pending)
- Special outpatient clinics according to § 116 SGB V for pediatric cardiology
- Development of medical guidelines for the German Society of Pediatric Cardiology
- Foundation of the AHF (congenital heart defects) alliance in which the following organizations have joined forces with the BVHK:
- Fontanherzen eV
- JEMAH eV
- IDHK eV
- Herzkind eV
- Children's Heart Foundation
The BVHK has published numerous information brochures and guidelines:
- Heart window: appears twice a year
- animated heart defect descriptions (VSD, Fallot, TGA, HLHS, the healthy heart)
- Cardiac catheter in children
- Well informed about heart surgery
- Prenatal diagnosis of congenital heart defects
- Family-oriented rehabilitation
- Children with heart disease in school
- Sport with CHD
- Truncus arteriosus communis
- Syndromes Associated with CHD
- Guide for families
- Heart transplant in children
- Social law assistance
- Cardiac arrhythmias
- Heart flutter
- It's only possible with a tattoo
- Strong in the network
Membership in associations
- BAG Self-Help Federal Working Group Self-Help for People with Disabilities and Chronic Illnesses and Their Relatives
- Corience independent European platform on congenital heart defects for patients, parents, doctors and researchers
- German Society for Pediatric Cardiology DGPK
- European Congenital Heart Disease Organization ECHDO (Association of European self-help groups "European Organization for Congenital Heart Defects")
- Federal association JEMAH eV . ; Adolescents and adults with congenital heart defects
- Children's network e. V.
- Competence Network for Congenital Heart Defects (AHF)
- Marfan eV
- National Register of Congenital Heart Defects (AHF)
The BVHK was awarded:
- Town & Country Foundation Award 2019
- German Childhood Cancer Aftercare Foundation for the chronically ill child 2014: Media Prize
- Family ties foundation for sibling projects 2013 € 2,500
- Children's network prize for good cooperation 2008 € 10,000
The BVHK has awarded:
- Journalist Award since 2005 for articles from print, radio and TV endowed with € 3,000 each
- City light poster campaign with design student Issa El-Zein (1st prize) Miriam Slowik (2nd prize) and others from the Düsseldorf University of Applied Sciences under the direction of Wilfried Korfmacher .
- Herz-Helden-Preis for special voluntary commitment (since 2016)
- Photo competition "Living with Heart Defects"
- BVHK website
- Website for children
- Portrait on the website of the Association of Resident Pediatric Cardiologists