Emotional support
You're part of a community that gets it. Connect with families walking the same path.
For families Newly diagnosed?
Newly diagnosed?
You're not alone.
A diagnosis of Phelan-McDermid Syndrome can bring many emotions and questions. We're here to help you take the first steps with confidence — and to connect you with a community that understands.
First steps
Some gentle first steps
Take them at your own pace. There's no rush, and no wrong order.
1
Take a breath
It's normal to feel overwhelmed. Give yourself time to process — support is here when you're ready.
2
Learn about PMS
Understanding the condition helps you advocate. Start with our clear, compassionate overview.
3
Connect with others
Reach out to families who understand. You don't have to navigate this alone.
4
Build your team
Find clinicians and specialists experienced with PMS to support your family's needs.
5
Plan for the future
Every person is unique. We'll help you explore resources and plan what's ahead.
Ways we support you
Support for the whole journey
Education & therapies
Guidance on early intervention, communication (including AAC), and school support.
Coordinated care
Help thinking through the medical team and follow-up your loved one may need.
Practical & financial
Signposting to benefits, services and practical help available where you live.
Find your association
Connect to a national organization near you — or to us directly if there isn't one yet.
Events & meetups
Family conferences and community gatherings to learn, share and belong.
Real families. Real journeys. Shared with heart.
Family stories Share your story
Every family has a story worth sharing
Stories connect us. They remind newly diagnosed families that there is community, hope and understanding on the other side of that first appointment. We're gathering voices from across our global community — and we'd love to include yours.
The day we got answers
How families process a diagnosis — and find their footing again.
Finding our people
The relief of meeting others who truly understand this journey.
Celebrating every win
The milestones, big and small, that mean the world.
We're here for you
Whenever you have questions, we're one message away.
Whether you need guidance, resources, or just want to connect — our team and community are here for you, every step of the way.