5. European Rett Syndrome Congress, 2.-4. November 2017, Berlin
The unique ambience of the Rett Congress in Berlin: international experts in a cooperative interchange with concerned parents
“Connecting people – exchanging knowledge and experience!“ This was the motto of the 5th European Rett Syndrome Congress, which took place at the beginning of November 2017 in Berlin. Some 450 affected families alongside their children, as well as attendants and caregivers, physicians and therapists came together to portray this so – called “rare illness” in all its facets.
The lectures of 60 internationally renowned doctors and scientists from 13 countries made the congress an outstanding event. The practical and everyday needs and problems of parents from all over Europe were addressed during workshops and discussions. A World Café with 150 participants brought all aspects of pressing subjects such as “transition”, “epilepsy” and “difficulties with sleep and breathing” of Rett children as well as their “communication possibilities” together.
The actress and Congress Ambassador Leslie Malton, whose sister is affected by Rett Syndrome, moved parents and experts to tears with some emotional passages from her book: “A Letter to my Sister” .
The European Coalition of the Rett Aid to Parents, ( RSE ) , assembled for an update on developments in all 27 countries; the delegates lauded the professional yet very genial atmosphere of the congress. Chinese attendees stated that the standards of content and organization set in Berlin would be difficult to repeat worldwide.
Congress President Prof. Wilken also welcomed stronger impulses for the research of the syndrome and for the therapeutic approach towards its treatment – in this year already, many new aspects, including the fundamental function of the MeCP2 gene, secondary complications and current therapies were part of the program.
All experts agree that fundamental research into the root causes of the spontaneous genetic defect and its grave consequences for the health and quality of life of the afflicted is necessary.
Congress patron Annegret Kramp-Karrenbauer, Prime Minister of the state of Saarland, sees the health policy challenges for treatment, “especially because Rett Syndrome is a disease which is relatively rare and not easily recognizable and diagnosable immediately”. Hence qualified continuing education and the international exchange of knowledge are the only chance to offer the afflicted girls and women a perspective towards growing older with this multifaceted disease pattern.
The fore most partner and advisor is the Aid to Parents of Children with Rett Syndrome, Elternhilfe für Kinder mit Rett-Syndrom in Deutschland e.V.: www.rett.de. They stand by the affected families from the time of the initial diagnosis, create platforms for communication, connect and support parents in situations which are often difficult, and support causational scientific research.
This film is an especially moving summary of the congress:
https://www.youtube.com/watch?v=WUnveCylhZo
More details about the sessions will follow soon…