Interest group for haemophiles

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IGH slogan

The interest group haemophiles e. V. (IGH) , Bonn, is a nationwide patient association that represents the interests of people affected by the bleeding disease ( haemophilia ) and their relatives.

history

The haemophile interest group was founded in the summer of 1992. Since 1993 she has been a permanent member of the Blood Working Group, an expert committee for the safety of blood and blood products.

aims

The goals of the haemophiliac interest group is to promote future prospects and real application possibilities in haemophilia treatment, e.g. For example: genetic engineering, gene therapy, securing the supply and the assumption of costs, as well as increasing or improving the safety standards in therapy

Members

Members

The members are those affected, relatives, sponsors, doctors and scientists, the association has a total of 1,100 members. (As of February 4, 2019)

supporter

The work of the haemophile community is supported by grants.

job

The focus of the work lies in the care and support of haemophiles and their relatives as well as in education about the clinical picture and information about therapy options and new preparations. For the different age groups of haemophiles , further training events, meeting measures and much more are organized and carried out. In particular, the improvement of the living situation of haemophiles ( medical , psychological and social ) care and advice from a permanent counseling center for congenital coagulation disorders of families affected by HIV and AIDS as well as the surviving dependents and the support of research and development projects as well as influencing the relevant decisions in Science, society, industry and politics. The situation of those affected is made easier by creating infrastructures for outpatient on-site care and network building.

organization

The association has voluntary professionals and full-time employees. It maintains representations in: Rottenburg am Neckar (federal office), SHG "Haemophilia Southwest", Elsdorf - Heppendorf (regional office North Rhine-Westphalia), Trier (regional office Rhineland-Palatinate), Merseburg (SHG "Haemophilia in Saxony-Anhalt"). The chairman of the board is Thomas Becker, Trier, the full-time managing director is Christian Schepperle, Rottenburg

literature

  • Mario von Depka Prondzinski, Karin Kurnik: Hemophilia: A Guide for Patients . Trias, 2008, ISBN 978-3-8304-3432-0 .
  • 26th Hemophilia Symposium: HIV infection, safety of ... 26. Hemophilia Symposium 1995: HIV infection, safety of factor concentrates, hemophilia therapy, pediatrics, thrombophilia, thrombophilic diathesis, hemorrhagic diathesis, case reports . Springer, 1997, ISBN 978-3-642-60418-8 .

Web links

Individual evidence

  1. ↑ a b c d Imprint of the Haemophilous Association (IGH) , igh.info
  2. ↑ a b Schwatz am Metzelplatz: He is fighting against Jens Spahn's new law , Schwäbisches Tagblatt , February 26, 2019
  3. ↑ drug law GSAV: bill to secure Arzneiverordnung has room for improvement , Medical Journal , April 11 2019
  4. ↑ 10 years' Interest Group Haemophiler eV , Bonn , April 4, 2011
  5. ↑ Interest group Haemophiler eV, Bonn , World Health Day
  6. ↑ Interest group for haemophiles eV (IGH) , se-atlas.de, supply atlas for people with rare diseases, February 4, 2019
  7. ↑ Projects from German patient organizations that Bayer Vital GmbH supported financially in 2018. Bayer AG , accessed on May 18, 2019 .
  8. ↑ Permanent advice center for congenital coagulation disorders. PlatzschaffenmitHerz, accessed on May 18, 2019 .