By RSE board member and ePAG Yvonne Milne
The EURORDIS Winter School that took place in Paris in March was a great opportunity for those attending to share information and network with other rare disability group representatives. We soon learnt that we had so much in common, with shared values and missions. As a result of creating a link with EFNA, I was invited to make a short presentation about our work in Rett Syndrome Europe at EFNA’s AGM in Lisbon in June. This meeting ran parallel with the Fourth EAN (European Academy of Neurology) meeting, attracting 6,700 neurologists from around the world.
The EFNA meeting brought together European umbrella organisations of neurological patient advocacy groups, including the EAN, with a theme of “Partnership in Progress” Our presentation covered the aims of RSE, what we have achieved and our dreams for the future. We stated that we will continue our work in reaching out to all European countries and that through collaborating with other organisations such as EFNA, we could ensure greater understanding of the complex health needs of Rett people, throughout the wider neurological community.