Eurordis 2016 – Edinburgh

The European Organization for rare diseases Eurordis held its annual conference this year in Edinburgh, Scotland on May 26-28.

This year not only members were invited, but also all sorts of other organizations and companies. The total number of participants this year was around 750! On behalf of the CMTC-OVM organization, Lex van der Heijden participated in this conference.

The theme this year was ‘ Game changers in weird diseases.” By delivering 21st-century healthcare to rare disease patients, together we can change the future! ‘.

During the plenary sessions there were also various dignitaries to the like:

1. Maureen Watts. Scottish Government Minister for Mental Health, UK.
2. Xavier Prats Monné. Director-General of the Directorate-General for Health & Food Safety. European Commission.

1. Alastar of Genetic Alliance UK. He used British humour to show how the world of the rare disease develops. Previously, patients and their families were ‘subjects’. Nowadays they are partners, and he expects that in the near future this will shift to determine the agendas and patients and their families will take the lead.
2. Igor Ban from Serbia told his personal story with lots of catchy images. He survived cancer and showed how this played in his family and his healthy brother, and also in its process was involved. For example, during a ‘bombing session ‘ with drugs, they all saw his illness as a kind of war, while his brother got candy. Today he helps children in the hospital where he was nursed when he had cancer.
3. Erin Sheldon from Canada is the mother of a child with Angelman syndrome. Angelman syndrome is a complex genetic disorder that primarily affects the nervous system. Characteristic features of this condition include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance (ataxia). Sheldon has a university degree in the field of child education. She earned her graduate degree studying the educational needs of students with Angelman syndrome. Spoken language is not useful for children who can not talk. She has developed symbol cards for them.
4. Larissa Kercuk of the Birmingham Children’s Hospital UK shared how they use their hospital social media. They are very active on social media and that has a huge positive effect. They use Facebook and Twitter in particular.
5. Arvin Gouw, Director BeHeard, presented how they empower & accelerate research discoveries ‘ finance. To do this, they had defined a project consisting of a number of phases: identify sponsors, identify applicants & identify winners.
6. Nabarun Dasgupta, Chief Science Officer Epidemico USA, made a presentation on “social listening”, or listening to the patient’s voice: social media for participatory pharmacovigilance and benefits. They develop software which analyses the posts on social media channels such as Facebook. This, for example, displays the pharmaceutical companies insight into what about their products is shared via social media.

In addition, Lex made new contacts. For example:

1. Prof. Hugh Dawkins (Director Government of Western Australia Department of Health) and Prof. Gareth Baynam (clinical geneticist). Gareth even knows some CMTC patients and he will refer them to our organization. In addition, he will bring us into contact with an Australian dermatologist who also is familiar with CMTC and where we can point to our Australian members.
2. Dr. Muthyala Ramaiah. President India Rare Diseases. We know each other from the NORD meeting 2015 in Washington. He has included the translation of our folder into the language Telugu through its organization to reach out to people in India.
3. Marc Ries. Director Luxembourg rare diseases.
4. Kelly du Plessis, CEO, and Mabvuto Mc Creedy, Director of Marketing & Fundraising, rare diseases in South Africa.
5. Denis Beyakov, Executive Director, rare diseases Russia.
6. Ulrike Holzer, Board Member, Alliance rare diseases Austria.

On the Eurordis website are many presentations and videos.