We are delighted that Rett Syndrome Europe has been successful with their funding application for 29,976 Euros to the European Joint Programme for Rare Diseases Network Support Scheme. The main meeting will be held in Budapest, Hungary with satellite meetings in the UK, Netherlands, Serbia, Georgia, Armenia, Croatia and Turkey. The meetings will be on 24th/25th February 2023.
Members of Rett Syndrome Europe (RSE) Scientific Advisory Board (SAB) and others would present to parent carers, clinicians, therapists and researchers, with opportunities for discussion and Q&As. This will be live streamed to the other countries where small groups of key stakeholders will meet allowing for discussion. Day 1 will focus on basic/translational talks and Day 2 on family orientated/therapy talks.
The event will aim to improve the quality of life for people with Rett syndrome and their families in countries where support, information and advice is lacking. It will encourage new research collaborations, particularly in areas where there are gaps in knowledge. With the prospect of a transformative treatment within reach, the development of patient organisations to facilitate clinical trial recruitment and engagement with EMA and regulatory bodies is crucial.
One of the speakers at the event will be Daniela Tropea, a researcher based at Trinity College, Dublin, Ireland. Daniela is developing a Data Sharing Platform. This is not a registry as such but a platform where researchers can search for anonymised Rett syndrome patient data. The families will complete a questionnaire and that will be held initially by the parent association in that country and only they will know the name of the patient/family. The patient will be assigned a code which is used on the platform.
The aim is to foster international collaboration in RTT’s research. The platform will seed the international exchange of knowledge between scientists and patients associations and will scaleup the research on RTT and related disorders, with a transformative impact on the life of patients and their families. We certainly hope some more of the European countries will get involved as it expands. Please keep an eye on the website for more information about the event as the planning develops and how to register to view the presentations.