The lionesses in panel discussion at Nordic Health Talks

The lion mothers were invited to participate in the Nordic event for rare diseases, Nordic Health Talks. Central board member, Guri Wevelstad participated in the panel discussion and highlighted some of the challenges we see today in the follow-up of children with rare diagnoses. The other panelists consisted of Olve Moldestad, head of newborn screening at OUS, Nard Schreurs, head of EHIN, and Bård Hoksrud, health policy spokesperson for the Norwegian People's Party.

Guri, who herself has a daughter with a rare form of mitochondrial disease, highlighted several challenges related to rare diseases. The excessively long time that many people experience today from the time a doctor suspects a rare diagnosis to the time a diagnosis is made was one of the main points. This waiting time is unbearable for both parents and children, many miss out on necessary follow-up and treatment while waiting for a diagnosis. There is currently a lack of comprehensive follow-up of children suspected of having a rare diagnosis, and there is also too little expertise in rare diagnoses. This means that many children with a rare diagnosis do not receive good enough follow-up. The professionals who have the professional expertise in rare diagnoses often do not reach the children and their parents. Children living with a rare diagnosis need good follow-up, but many of these children are met by a new hospital doctor without expertise in the rare diagnosis at all check-ups.

The Lion Mothers are working to establish a “package process” for suspected rare diagnoses, where the investigation begins quickly, the child is closely monitored along the way, and professionals with expertise in rare diagnoses and any treatment begins more quickly. Living in uncertainty is an incredible burden, and Guri was open about the enormous burden it is to know that something serious is wrong with the child, but without anyone being able to say what it is. Many people today wait up to 10 years to receive a truly rare diagnosis, while others live in uncertainty even longer.

The panelists all agreed that Norway today has a long way to go in terms of following up those who currently live with rare diagnoses.

We thank you for the invitation and a good debate about the follow-up of rare diagnoses.

You can watch the entire event via the link below. The section where the Lion Mothers participated is at the bottom under “Local Events”.

Bridging the Gap: How Can Nordic Countries Secure Better Care for Rare Disease Patients?