Who we are

The European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) is a non-profit organization that brings together European national patient associations committed to defending their vision of equal access to treatment and care for all IPF patients, regardless of geography, socio-economic status or age. Our common view has encouraged us to officially establish the first European IPF and other related disorders federation in July 2016.

Our commitment and ambition are grounded in one of our key achievements: the development of the European IPF Charter, which was launched in the European Parliament in September 2014. The Charter lays down the rights of IPF patients and concrete policy recommendations that, if adopted, would ensure improvements in patients’ quality of life whilst supporting efforts to find a cure.

We aim to serve as a trusted resource for the IPF community by raising awareness, providing disease education, advancing care, and supporting research for IPF whilst defending the interests of IPF patients at European level. We fight for equal access to treatment, information and ensuring exchange of information between national patient groups. 

Each year, during IPF World Week, IPF patient associations across the world join forces to raise awareness of IPF, call for better access to care, and bring hope to those living with the disease.

Our sponsors

Without our supporters, EU-IPFF would not be able to reach the goals we have set for ourselves and the entire IPF patient community.
We would like to take this opportunity and thank each individual one of our sponsors for their continued commitment to our cause.

Executive board

Our membership consists of national patient associations from across Europe, which are represented on the EU-IPFF Executive Board or within the General Assembly by IPF patients and family members.

Our members

Associated members

Support near you

Are you an IPF patient and looking for an IPF Patient Organisation in your country?

The European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) brings together European national patient associations committed to support patients and families affected by IPF and related disorders.

We recommend that patients and their carers contact the EU-IPFF’s member organisations in their home country to receive support and information. You can find EU-IPFF’s member organisations here.

In order to become full members of the EU-IPFF, these patient organisations have gone through a thorough assessment to fulfil the EU-IPFF’s membership criteria. This includes a review to consider whether they are a patient organisation that is mainly led by patients and carers, shares EU-IPFF’s aims and objectives, is committed to a non-profit-making purpose, and have provided a declaration of potential conflict of interests. The full list of criteria to become a full member can be found here.

In addition, the EU-IPFF’s Members have accepted additional organisations of relevance as Individuals, Partners and Supporters of the EU-IPFF (so-called associate members) They support the EU-IPFF’s mission and objectives, but do not fulfil the EU-IPFF’s full membership criteria. You can find these organisations here. The full list of criteria to become an associate member can be found here.

When contacting other organisations, online communities or initiatives that provide support and information to patients and carers, we recommend you to check whether their governance is independent from commercial and other interests, whether they hold a non-profit status, and whether they have proven and quality-controlled activities such as patient support or research in the area of IPF and related disorders.

Serious patient organisations have governing bodies (e.g. a general assembly or a board) which are elected by their members and include patients and their carers. Their statements and opinions reflect the views and opinions of their membership. Respective consultation procedures are put in place, e.g. when drafting position papers. Furthermore, they publish their activities, disclose their sources of funding (incl. names of sponsors and amounts) and make audited financial reports available on their website.

If you have doubts about the credibility of a specific organisation, online community or support initiative, please contact the EU-IPFF Secretariat and seek for help. We will be more than happy to check the integrity and credibility of a specific group or initiative for you and - if deemed appropriate - refer you to another “real” patient organisation.

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