During the project meeting held in Warsaw in April 2024, experts and patient organisations discussed the disease and the needs of patients.

The meeting was hosted by Professor Piotr Socha, a paediatric gastroenterologist from the Children's Health Centre in Warsaw. Patients were represented by Katarzyna Lisowska, President of the Per Humanus Foundation, which has been working for the last two years to educate and improve the quality of life of Wilson disease patients in Poland. The meeting also saw the launch of an association that will work for patients with Wilson's disease.

In the course of the speeches, the main achievements of the last two years of information and education activities in the field of Wilson's disease were presented. A highlight was the establishment of the polish support group 'Living with Wilson's Disease'. There are already 215 members in the group and most of them are actively involved in discussions, trying to gain knowledge, answering questions or sharing their experiences. 

One of the key activities has been the preparation and realisation of the 'Copper Life' podcast series, produced with leading experts in the field of Wilson's disease. This was an educational project aimed at patients and their families to disseminate knowledge about different aspects of WD under the auspices of the Per Humanus Association and Foundation "Living with Wilson Disease".  

With the creation of the website, this is the first such compendium of knowledge for patients in Poland. The website, which was created with different specialities and academic degrees, contains all the information patients need. Complemented by providing patients with the latest information on available treatment methods and centres specialising in WD, signposts have been established for patients so that they do not feel lost in the system of diagnosis and treatment. President of the Per Humanus Foundation over the past two years, has taken every step to show the problems faced by patients and has attended almost all key health events, conferences and meetings to holistically highlight what patients need to make their patient pathway as effective as possible. 

The WilsonMed meeting was also a platform to highlight the difficulties in implementing a drug programme for Wilson's disease in Poland.

Needs of patients:

• Further educational activities, continuation of good practice in the information and education areas;
• The patients report the need for modern drug therapies that do not cause side effects and do not result in treatment interruptions or discontinuation. Based on the exchange of international experiences, patients see that not all innovative treatment options are used in Poland, although they are guaranteed by the drug programme;
• There is no specialised centre in Poland for the treatment of Wilson's disease, and patients are forced to travel very long distances for medical consultations. A network of centres throughout the country significantly affects the comfort and effectiveness of treatment.

Meeting in an international group of experts and patients and exchanging experiences on countries' drug policies for Wilson's disease can have a positive impact and support the expected system changes.