The voice & OI – representation & advocacy
OIFE advocates for access to competent healthcare and social support for people with OI in Europe and internationally.
To achieve our vision and mission, OIFE is represented in many different forums and arenas on a European level. We are the biggest stakeholder for osteogenesis imperfecta in Europe and we are proud to say that we consider ourselves the voice of people with OI.
EURORDIS
OIFE is a member of EURORDIS, which is an umbrella organization including more than 1000 organizations for rare diseases. We usually attend the meetings & conferences of EURORDIS as well as the meetings in Council of Federations two times a year. OIFE has also been represented at the European Round Table of Companies (ERTC) several times.
We also collaborate more loosely with other organizations relevant for our cause. This includes other European federations for rare conditions, which we might have things in common with.
Other European arenas
These are some of the other European arenas we are represented:
Networking
Networking is one of the main tasks of OIFE. We bring together professionals, organizations, people with OI and their families as well as other stakeholders in different arenas.
Events
We host different kinds of events and spread information and try to stay up to date about what is going on in the international OI-community. We also attend larger events and scientific conferences of interest to the OI-community. Read more about events in our event page and stay up to date on important events through our event calendar.
The professional database
The OIFE has through the years developed a substantial database of researchers & clinicians with OI-expertise. The list contains more than 1000 names of OI-professionals worldwide and is used for the following purposes:
- Distribution of OIFE Magazine
- Announcements of research grants & vacant positions
- Invitation to international events and conferences
- Finding experienced professionals in countries without an OI-organization
Please send an email to office@oife.org if you want to be on this list. You can also get more actively involved as a professional.
Communication
One of the other main focuses for OIFE is to keep the international OI-community informed about what is going on about projects, activities and events which are relevant for OI. We also play a role in raising awareness on OI and the impact OI has on the lives of people with OI and their families. We do this through:
- Annual campaigns, mostly connected to Rare Disease Day and our international awareness day for OI Wishbone Day.
- Our periodical OIFE Magazine
- Our website
- Our social media channels
- Speaking at events organized by our organizations or others
Research & development
The OIFE does not do fundraising for research, but we do promote scientific research in OI in many different aspects. We have our own Medical Advisory Board to advise us on questions regarding treatment and research. We promote patient involvement in clinical trials and recruit patient representatives for various projects.
The OIFE gets directly involved in research projects in different ways. See section on research & development for more information.
Patient involvement
OIFE believes that the voice of the people with OI and their families should be heard in all contexts where decisions about their treatment are being made. This includes patient involvement on:
- an individual level (to influence your own treatment and services)
- a service level (involvement of patients in hospitals, centers of expertise etc.)
- research & development projects incl. pharmaceutical trials
- regulatory affairs
See section on patient involvement for more information.
OIFE projects
OIFE has some long-term projects and some shorter time limited projects. See section on about our projects for more information.
Empowerment
OIFE empowers our member organizations in the following ways:
- Creating arenas to meet for exchanging information & ideas
- Internal newsletters for OIFE delegates
- Guidelines for our member organizations on various topics
- We also support development of OI organizations and local support in new countries (outside OIFE).
Peer support
OIFE believe that advice between peers is very important. By peers we mean people who are or have been in the same situation as you are. Peer support can happen between people with OI, parents of OI-children or between other family members (siblings, grandparents etc.).
OIFE have our own online peer groups for adults and young people with OI on Facebook.
Our member organizations are also an important arena for peer work, where young children with OI can meet adolescents and adults, to have role models.
See section on peer support for more information.
Social network
Via different communication channels (mail, Facebook, Instagram, WhatsApp) OIFE gets a lot of requests from individuals who are searching for advice and help around the world. We have dedicated Social Network Coordinators to guide individuals who need help.
Do you need advice? Send an email to socialnetwork@oife.org
See section on social network for more information.