2024 Research Grant RFA – Innovation Award
We are seeking highly novel grant applications which explore an understudied area of Phelan-McDermid syndrome research. Successful proposals will open new…
2024 Conference Sessions at a Glance
This event stands as the world's preeminent gathering for Phelan-McDermid families, offering a unique opportunity for direct networking and engaging with pioneering researchers, social interactions, and attending informative sessions with esteemed guest speakers to discuss the pressing concerns and challenges within our community.
Neuren Phase 2 trial Investor Presentation
Neuren has released a statement that the drug was found to be generally safe at the dose tested, having no serious adverse effects.
Press Release – Neuren Phase 2 trial shows significant improvements in Phelan-McDermid syndrome
Neuren has released a statement that the drug was found to be generally safe at the dose tested, having no serious adverse effects.
2024 Phelan-McDermid Syndrome Conference
Join us at the Radisson Blu, Mall of America in Bloomington, MN, USA, from July 17-20, 2024. This contemporary hotel offers a seamless connection to a plethora of activities within the Mall of America, ensuring comfort and convenience, including indoor walking spaces, air conditioning, and complimentary airport shuttle services.
Conference Funding Resource Guide
Attending a conference requires a lot of planning and funds for families. Past attendees have told us that being at the conference is “life changing”. We hope you find resources to help you with your trip. These resources apply to the United States. If you know of other sources in the US or internationally that we can share, please contact us at conference@pmsf.org.
2023-2027 PMSF Strategic Framework
As the pre-eminent global organization for families affected by the rare genetic condition Phelan-McDermid syndrome, the Foundation has positioned itself to play a leading role in patient advocacy and family support and driving research breakthroughs.
Caregiver Mental Health Resources
Caring for emotional and physical health is critical for caregivers. These mental health support resource links were provided by Kiley Richards,…
US Updated consensus guidelines on the management of Phelan–McDermid syndrome
The objective of these updated clinical management guidelines was to: (1) reflect the latest in knowledge in PMS and (2) provide…
European Consensus recommendations on sleeping problems in Phelan-McDermid syndrome
Early onset sleep problems and disorders are very common in individuals with Phelan-McDermid Syndrome (PMS) with rates of up to 90%. These sleep problems and disorders cannot be taken lightly. Not only do they have a major impact on the health, behaviour, functioning and learning opportunities of affected individuals, they can also have detrimental effects on the well-being and resilience of parents and caregivers, ultimately affecting the physical health, mental health and well-being of the whole social system.
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