Written by Lars Romundstad, OIFE volunteer from Norway 

EURORDIS is the umbrella association for organizations for rare conditions in Europe. And the 26th and 27th of May 2023, OIFE was represented at the EURORDIS Membership Meeting in Stockholm.  Lars Romundstad, represented the OIFE together with Rebecca Tvedt Skarberg, who is also a Board member of EURORDIS.

Different phases of life

This was the first time in three years that the rare community could meet physically after the pandemic, and more than 200 participants attended the conference. The workshops were split into different phases of life; Children, Adolescence, Adults and Aging. All of which had an overall emphasis on a holistic approach.

OIFE delegate Rebecca Skarberg from Norway was the moderator for the sessions on adults, and Lars Nesset Romundstad, deputy chair of the Norwegian OI association represented OIFE as a speaker in a panel discussion about the different aspects of adolescence and rare diseases. From the OI community, Inger-Margrethe Paulsen also attended, representing the Norwegian OI association (NFOI).

In all the different phases of life, several topics and challenges were brought up. Some overlapping, and some specific to certain age groups. Overarching challenges for rare diseases throughout life included inadequate, and difficulties accessing healthcare professionals, funding for research and treatment, and general lack of understanding of different conditions and diseases.

Workshop on adolescence

In the workshop on adolescence, a large portion of the discussions revolved around the transition from childhood to adulthood. In healthcare, all panelists, as well as most of the audience, had experienced different and overlapping challenges in moving from a holistic pediatric care, to a multidisciplinary and sometimes complicated team of different experts, clinics and doctors only examining, treating and researching certain body parts, symptoms and conditions.

In this regard, it was therefore very useful that two of the panelists were from rare diseases Sweden (Sällsynta Diagnoser) and had a project focusing on the transition from childhood to adulthood. The project started in 2017 and involved conversations with different adolescents with rare diseases and their experiences with transitioning and becoming adults.

One of the key findings were the need for a designated coordinator that could step in as an overarching treatment ensuring holistic care in a system which increasingly focuses on small and separate challenges. This coordinator could ensure a holistic approach to a variety of different healthcare professional experts in their fields, but to a limited extent discuss in between each other. This way, findings from fields as varied as sexuality and orthopedy, psychology to dermatology and physiotherapy to education, could be coordinated and discussed to provide the best possible holistic approach to living a life with a rare disease.

The needs of young people with rare diseases

In the panel discussion on adolescence, sports and physical activity, and the importance of access, participation, and involvement into events with other young people was heavily emphasized. In addition, the fundamental differences in Europe when it comes to accessible transport, activities, education, and training was also underlined. Also, the importance of also recognizing that youth and young adults with rare diseases have very similar and overlapping needs and challenges with other people in the similar age group, that does not have a rare disease. And the expectations, interests and needs for and by this age group needs to be considered with this in mind.

During the workshop, it was evident that most (but not all) organizations and associations have experienced difficulties in recruiting young people to actively take part in discussions, workshops, and to volunteer into decision making processes. The reasons behind these are varied, and also hard to prove. But discussions around both the taboo/discomfort that some might experience when spending time in large groups of people with visible disabilities were quite heavily voiced. Disinterest was another – where gaming, socializing with friends and other activities are of more interest to young people than actively engaging in patient groups.

Some success stories where also shared. One organisation have found success in attracting more young people by offering topics and activities such as gaming, movies and other fun stuff. OIFE has also gotten great feedback from its member organisations that its European Youth Events held almost every year has resulted in not only being something more and more young people with OI wants to attend, but have also experienced some more interest and initiative from young people after establishing good personal relationships with peers at these camps.

Rebecca (left side) is a Board member of EURORDIS

Great conference!

Overall, all the participants from the OI community were tremendously satisfied with the outcome of the workshops and the overall conference. We will continue to support the great work that EURORDIS does, and continues to have good relations with the wider rare community in Europe and beyond.

Read the report from the meeting written by EURORDIS here.