Representation

OIFE is member of EURORDIS, which is an umbrella organization including more than 750 organizations for rare diseases. We usually attend the meetings & conferences of EURORDIS as well as the meetings in Council of Federations. We also collaborate more loosely with other organizations relevant for our cause.

Networking

We bring together professionals, organizations, people with OI and their families as well as other stakeholders on different arenas. This in order to achieve better quality of life for people with OI.

We host events and spread information and try to stay up to date about what is going on in the OI-community.

The OIFE has through the years developed a substantial database of researchers & clinicians with OI-expertise. The list contains more than 950 names of professionals worldwide and is used for the following purposes:

  • Distribution of OIFE Magazine
  • Announcements of research grants
  • Invitation to international events and conferences
  • Finding experienced professionals in countries without an OI-organization
Networking group photo

Advocacy

OIFE advocates for access to competent healthcare and social support for people with OI in Europe and internationally.

During summer 2017, OIFE formally joined a number of European organizations in a campaign to tell EU president Juncker that health collaboration is crucial for Europe’s future.

OIFE also supported the initiative of the organization CLAN to the World Health Organization. The goal of the initiative was to have bisphosphonates for children with OI included in the list of “essential medications”.

ERN-BOND

The European Reference Network for Rare Bone Disorders (ERN-BOND) was established in 2017 and brings together healthcare professionals (HCP) from 10 EU Member States. The network has selected osteogenesis imperfecta, as an area of focus in their first phase.

OIFE assists ERN-BOND with dissemination of information through OIFE Magazine and by spreading requests to our member organizations with HCP in ERN-BOND as well as our contact persons in the countries without existing OI-organizations. OIFE also suggests candidates to the European Patient Advocacy Group (ePAG) of ERN-BOND.

ERN Accelerating and improving diagnosis for rare diseases patients

Research

The OIFE does not do fundraising for research, but we do promote scientific research in OI in many different aspects. See section on research & development for more information.

Empowerment

OIFE empowers our member organizations in the following ways:

  • Creating arenas to meet for exchanging information & ideas – like OIFE AGM
  • Internal newsletters for OIFE delegates
  • Guidelines for our member organizations on various topics

We also support development of OI organizations and local support in more countries.

Guiding individuals

OIFE does not in any case provide financial support to individuals. We can provide advice and peer support and help to find OI-groups or doctors where the actual person lives. We have a Social Network Coordinator for this purpose. See section about Support Networks for more information.

Exchange of ideas at OIFE AGM 2018