Partnering Patient Organisations

Logo ELF

The European Lung Foundation (ELF)

The European Lung Foundation (ELF) was founded by the European Respiratory Society (ERS); the world’s leading medical organisation for respiratory experts. The aim of the ELF is to bring together patients, the public and respiratory professionals to positively influence respiratory medicine. 

The ELF website provides a wealth of useful resources to share the latest developments in lung health research from the ERS and its members, in a clear and straightforward language. The ELF also work to ensure that people with lung diseases and the general public have the opportunity to influence respiratory research and guidelines at the European level.

The International Federation for Spina Bifida and Hydrocephalus (IF)

The International Federation for Spina Bifida and Hydrocephalus (IF)

The International Federation for Spina Bifida and Hydrocephalus (IF) is the world-wide umbrella organisation (INGO) for Spina Bifida and Hydrocephalus organisations. IF aims to disseminate information and expertise throughout the world to families, individuals, professionals and volunteers involved in the Hydrocephalus and Spina Bifida field.

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NEE eten!

Nee-eten! is a patient association for parents of children that refuse to eat or have a feeding tube. The association has three main objectives: 

1) Contact between patients: The association organises various contact days.

2) Awareness: The association provides information to the parents and (para) medics. 

3) Advocacy: The association attempts to better treatments for children and stimulate enhanced cooperation between various therapists.

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Children's Liver Disease Foundation

Children's Liver Disease Foundation (CLDF) was formed in 1980 and is a unique national UK-based charity dedicated to taking action against the effects of all liver diseases of childhood.

Based in Birmingham, CLDF is:

  • a comprehensive information hub for healthcare professionals and the general public
  • a tailored support service for children, young people and young adults with liver disease and their families
  • the lead charity supporting medical research into all aspects of childhood liver diseases
  • the voice for children, young people and young adults with a childhood liver disease and their families.

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IPOPI - logo

IPOPI - the International Patient Organisation for Primary Immunodeficiencies

IPOPI, the International Patient Organisation for Primary Immunodeficiencies, is the Association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency (PID) patients worldwide. Established in 1992, IPOPI works as the global advocate for the PID patient community in cooperation with its National Member Organisations (NMOs) and key stakeholders. 

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