The annual European Conference for Rare Diseases, organised by Eurordis, took place this year on Friday 11th and Saturday 12th May. The Findacure team headed to Vienna to present their MCDS-Therapy poster, meet other rare disease advocates, and learn from the very informative sessions on offer. The team thoroughly enjoyed the conference, and each member has explained below what their favourite sessions or other highlights were.
Mary Rose (Events Officer)
I thoroughly enjoyed attending ECRD Vienna, especially as it was my first opportunity to attend an international conference on rare diseases since joining Findacure two years ago. Having relatively limited knowledge of the rare disease landscape outside the UK, I wasn’t too sure what to expect. But throughout the two-day event, I was struck the vastness of the European rare disease community and inspired by everyone’s commitment to make a change and improve the lives of patients.
A highlight of the conference for me was a session titled ‘Disability: unveiling the invisible double-burden of rare diseases’, where Eurodis and Orphanet both presented findings on patients’ perspectives of rare diseases and disabilities. Whilst the results were unsurprising to those with knowledge of the patient experience, it was eye-opening to hear that, despite this research, rare diseases are still excluded from disability conversations. The panel session expanded on this, shedding light on the differences between how the disability and rare disease communities communicate. For many years, the disability community has advocated for itself using a ‘Human Rights Approach’ and argued that a failure to include and acknowledge the needs of those with disabilities is a “violation of their human rights”. The panel suggested that the rare disease community needs to adopt a similar approach to ensure rare diseases are integrated into the disability agenda.
Katie (Fundraising Officer)
My favourite ECRD session was the very last one I attended; ‘Genome Editing Debate: are we heading towards a world without rare diseases?’. The programme promised lively debate and I was not disappointed! Vivienne Parry was surely the most energetic speaker of the conference, acting as both moderator and entertainer, and there was a great range of rare disease advocates in the room. I am always eager to hear patient stories and this session allowed parents and patients to speak without a filter, highlighting the brutal reality of risking anything to save your child’s life. I was truly inspired by the honesty of the audience, the desperation for treatments, and the motivation to keep fighting against all odds.
Libbie (Projects and Communications Officer)
Exploring the display of 300+ posters submitted by researchers and patient groups was my favourite part of ECRD. I thought I was relatively aware of the work taking place across Europe, but boy, I didn’t know the half of it. The sheer number of posters really brought home how large the European rare disease community is, and their content highlighted just how much work is taking place within it. It was good to feel part of this wider community. If you want to take a look, head over to the ECRD posters webpage.
In particular, I enjoyed the poster walk for European Reference Networks (or ERNs). For those who don’t know, ERNs are virtual networks of healthcare providers across Europe. No country alone has the knowledge and capacity to treat all rare and complex diseases, so ERNs allow patients and doctors to exchange information and knowledge without having to travel to another country. The ERNs use a dedicated IT platform and set of telemedicine called CMPS (Clinical Patient Management System) to review a patient’s diagnosis and treatment.
ECRD 2018 was a huge event – over 850 people attended the conference, all with the aim of discussing rare diseases. The most striking part of the conference for me though, wasn’t the delegates, the talks, or the posters, all of which were excellent, but the scale, scope, and ambition of the work that the rare disease community are driving forward. The conference really was about thinking big, about trying to highlight ways that even a small local patient group can have an impact on a national or international scale. The European Reference Networks (ERNs) understandably form a central part of the strategy for this, but there were many other projects that were highlighted throughout the conference.
Most strikingly, Rare Disease International has secured the first committee at the United Nations focussed on rare diseases. This provides a simple way to bring the issues of patients living with rare diseases to a global audience, and try to raise their profile as a global health priority. This committee is already working in collaboration with existing UN disability groups in order to highlight the shared goals and commonalities between the two communities. Furthermore, the committee has begun working directly with the World Health Organisation (WHO). Both the UN and WHO provided video messages for the plenary session of ECRD, something that would have seemed outlandish two years ago in Edinburgh.
The UN and World Health Organisation can seem far removed from the day-to-day workings of a rare disease patient group. While engaging with these bodies is unlikely to impact your daily lives in the short term, getting rare diseases on the agenda at this international level will begin to apply pressure to national governments to implement real policy changes to benefit the lives of patients. Furthermore it highlights the growing power and confidence of the rare disease community. Despite the isolation patients can feel, despite the lack of treatments, and despite the lack of experience, we are making the world take notice of our needs and our cause.