A funded networking event “European meeting on Phelan-McDermid syndrome” is being organised to discuss the guideline recommendations and to strengthen the collaboration that was started in 2020 by the European consortium on Phelan-McDermid syndrome (PMS) and supported by ERN-ITHACA, in order to tackle the knowledge gaps that they identified, as well as to discuss how best to proceed with the establishment of a European database enabling the collection of more data on the natural history of PMS, especially on the often observed mental health problems.
This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the seventh round of funding.
The in-person event will take place over three days on June 20th – 22nd in Groningen, Netherlands. The meeting will be hosted by the centre of expertise for PMS of the UMC Groningen, Netherlands, member of ERN-ITHACA.
The outcomes of the meeting will be:
- a strong collaboration between different European research groups and centres of expertise for Phelan-McDermid syndrome
- insight in the needs of the patient representatives and strengthen their participation in research- a priority list of knowledge gaps that need to be studied
- consensus on the variables to be collected in the European PMS database
More information here: https://ern-ithaca.eu/events/upcoming-events/european-meeting-on-phelan-mcdermid-syndrome/