By Ingunn Westerheim, OIFE President

Yesterday we received the first version of the new video about OIFE from “Balancing Life with OI”. We cannot wait to share it with the rest of you. One of the questions that was asked in the video was “What does OIFE mean to you?”. This can be a tricky answer to answer sometimes, because OIFE is not an ordinary national patient organization. OIFE is an umbrella – with a complex set of activities and goals. And it can be difficult to describe who we are and what we do. Especially for our national delegates, when their local members ask.

The easy answer for me personally, would be to say that OIFE is my baby. I’ve been the OIFE president for eight years now and I have seen the organization grow and develop with the help of countless engaged and dedicated volunteers. OIFE is very close to my heart and every day I think about how we can develop and strengthen the umbrella organization even further. Not alone, but with the help of our many volunteers – existing and future.

OIFE is also friendship. Both in OIFE AGMs, topical meetings and OIFE Youth Events – friendships for life have been established, just like they do in national events.

A national OI-organization is truly a unique space, where people with the same appearance, experiences and mindset can come together to laugh, share, create and work to develop better services and treatment for OI in their countries. Or just to enjoy the presence of peers.

Or we can meet on a European level as we do. In co-existence with our good friends and contacts outside Europe, who provide us with good ideas, best practices, and perspectives. And the latter is perhaps the most important. Jesus – the leader of the newly re-established OI-organization in Panama, recently told me that a baby girl with OI in Panama passed away because of pulmonary issues. Maybe she would have survived in another country with better care and more resources? Maybe not. But it’s a fact that a lot of people in different corners of the world put in a lot of energy, to avoid that babies and adults with OI die – because treatment and knowledge of OI is not good enough in their country.

OIFE is also network. We are a huge international community with strong collaborations between researchers, clinicians, industry representatives and people with OI and their families. On a relatively equal level.

In Stockholm we all came together face to face, to exchange ideas, knowledge, and experiences on living with pain and OI – and how we can improve assessment, measurement and not to forget, management of pain for children, adolescents and adults with OI. For me the conference was a memorable experience. We had worked for almost 2 years to make it happen. And to see and hear so many interesting and informative talks, anonymous testimonies and people sharing from their own experiences and knowledge was amazing. We are working hard to edit and text the recordings from the conference – to make it available to all of those who did not have the opportunity to be there – either because of time, travel, money or health reasons.

OIFE is also knowledge and trust. More and more often stakeholders contact us to hear the voice and perspectives of people with OI. This includes researchers who want input for their research applications, companies who are planning their clinical trials or clinicians who want to know how they can offer better services to patients with OI. Sometimes I feel we are getting too popular. Because we struggle to meet the demands. But this is a luxury problem. It only means we need to recruit more board members, train more patient experts and motivate more and younger people to become involved as volunteers for OIFE and the national OI-organizations.

Because sometimes we tend to forget – without the national OI-organizations, OIFE is nothing. We are not a national organization with individual members. We are an umbrella consisting of 40 member organizations, and without them we cannot do a lot. We have 20 ordinary members in Europe, 15 national organizations outside Europe and 5 supporting members, where CLAN was the latest addition. You can read more about them in this magazine.

I wish you a very good summer and autumn. See you in Valencia next year! Maybe we will meet some future volunteers there?

Kind greetings from
Ingunn – OIFE president

Below you can find our brand new video “What is OIFE?” with captions in English, which can be auto translated to other languages.