The goal is a national strategy for rare diseases

The 4th Swiss Rare Disease Day took place on Saturday, March 1, 2014, at the Inselspital Bern. The focus was on the numerous administrative, legal and medical problems that patients with rare diseases have to overcome today. In total, more than 300 people and over 30 patient organizations participated.

The program addressed administrative issues faced by rare disease patients with a variety of presenters, a roundtable discussion and ample time to answer specific questions.

This is how Christine de Kalbermatten from ProRaris put into words what families of people with a rare disease expect. In addition to diagnoses, they often lack legal foundations, psychological care, clarity about the insurance situation, and so on. Prof. Dr. med. Thierry Carrel, Clinic Director of the Bern University Clinic for Cardiovascular Surgery, also expressed the wish for closer cooperation between health insurance companies and specialists. The roundtable discussion once again highlighted the importance of good collaboration between patients, physicians, patient organizations and centers of excellence.

Swiss strategy 2014?

Internationally, many countries have already adopted rare disease strategies. In Switzerland, there is hope for the implementation of a national strategy for rare diseases in 2014. According to the FOPH’s deputy director, Oliver Peters, this will be presented at the end of May 2014. He expects to see the first concrete measures this fall.

Networking is central

At the end of the event, ProRaris board member Claude Voegeli echoed the words of FOPH Deputy Director Oliver Peters, underlining that “the implementation of this national strategy is really urgent today, as is the central place that must be given to the patient in our healthcare system. The quality of the healthcare system is also measured by how rare diseases are treated.”

Meanwhile, patient organizations, professionals, centers of excellence, foundations and the patients are networking their expertise to help each other as much as possible and promote resilience.

Support the patient

One example of support for patients is the comic children’s book “So wie Du und ich” (Like you and me), which has been available since September 2013 and makes rare diseases explainable in comic language and tangible thanks to true-to-life stories. Twelve animals give a face to different diseases. In this way, the book encourages troubled children to set out in search of friends like the comic book heroes. Children learn that they are not isolated despite their severe suffering. It also improves social skills in healthy children and resilience in affected families.