Report from the EURORDIS Membership Meeting in Budapest

31 May 2017


On 19 and 20 May 2017, I attended the EURORDIS Membership Meeting in Budapest. I always find EURORDIS events useful and informative, and this year was no exception. EURORDIS alternates between smaller Membership Meetings and larger European Conference on Rare Diseases. The Membership Meetings tends to be more focused on developing patient groups’ ability to support their patients.

This year’s meeting was extra-special, as it also coincided with EURORDIS’ 20 year anniversary*. That meant that the majority of talks on the first day were focused around the achievements of the past 20 years, and our hopes for the next 20 years. Discussions were mainly around three main topics: the role of individual patient advocates, the growth of patient organisations and our ability to influence European policy in rare diseases.

I was invited to speak in the panel discussion around the role of patient organisations, looking at the partnerships we have formed in order to increase our own abilities to support patients and investigate new treatments. At the AKU Society, we’re particularly proud of the consortium we have built for the DevelopAKUre clinical trials, uniting patient groups, pharmaceutical companies, universities and hospitals together to study a potential new drug for AKU patients, called nitisinone. The future of patient organisations look to become more professional, with European recognition within the European patient networks (ePAGs) supporting the clinical European Reference Networks (ERNs).

The second day of the meeting was split into several different workshops; on ERNs, Alternative therapies for rare diseases, Practical advice for patient organisations, and EURORDIS surveys. I helped to organise the workshop on practical advice – called the Survival Kit for Patient Organisations. Covering topics such as branding, creating mission statements, hiring staff and volunteers, and fundraising, we attempted to give ideas to new and small patient groups to help them to develop and become more capable of supporting their patient members.

One of the best aspects of EURORDIS’ events for me is the networking. The idea for the workshop actually came from conversations at previous meetings where myself and others had been asked for advice about to grow small patient organisations. EURORDIS agrees that this aligns with their goals of supporting patient groups of any size across Europe, and so were happy to arrange the workshop.

~ Oliver Timmis, RD-Connect Patient Advisory Council, CEO of AKU Society


* As a part of the anniversary celebration, EURORDIS has published a list of its achievements since the beginning of the organization, including establishing rare diseases as a public health priority and strengthening the patient voice. Read more >>