You are not alone.
We are here to walk on this journey with you.
Watch Our Welcome Video
Welcome to the “First 100 Days” of your membership with PMSF. We’re so glad you found us and we are here to support you on your journey with this
Watch our welcome video and then scroll down for links to register for our New Family Welcome sessions. Please note that the “First 100 Days” is for families in the U.S. only.
Questions? Please email our Director of Family Support, Carla D’Imperio, at carla@pmsf.org
Join Our New Family Welcome Sessions
Please join, Carla D’Imperio, Director of Family Support, for our monthly Zoom meetings with others who have recently joined our membership. We will share our stories and begin building community with other newly diagnosed families as well as gathering a list of questions. Our Director of Family Support will start to answer your questions as the group begins to explore Phelan-McDermid syndrome resources together.
Below are the upcoming session dates. We offer this session every month. You may register for as many of the sessions as you would like:
- Thursday, September 3 at 1pm ET — CLICK HERE TO REGISTER
- Thursday, September 24 at 1pm ET — CLICK HERE TO REGISTER
- Thursday, October 29 at 1pm ET — CLICK HERE TO REGISTER
Explore Our Clinical Care Resources
There are several key resources that we want to make sure our newly diagnosed families are familiar with:
- Medical Advisories
- International/U.S. Clinical Care Guidelines
- European Clinical Care Guidelines
- Pharmacological recommendations
- Phelan-McDermid Syndrome Clinics
Watch Our Pathways Education Series Webinars
From nutrition and medical advocacy to caregiver support and navigating insurance, each Pathways webinar offers valuable insights and practical tools. You can access all the recordings, slides, and handouts here. The links to the recordings are also below.
- How to Talk about Phelan-McDermid Syndrome
- De-escalation Strategies for Crisis Situations
- Medical Advocacy & Strategies
- Puberty, Menstrual Management, and Women’s Health in Phelan-McDermid Syndrome
- Handling Denials from Insurance & Medicaid
- Diving into State Resources (US-focus)
- Coping Strategies for Caregivers
- Promoting Overall Health in Phelan-McDermid Syndrome
- Nutrition and Phelan-McDermid Syndrome
- A Tour of PMSF’s Resources
Watch our New Family Webinar
A new Phelan-McDermid syndrome diagnosis brings a lot of questions. This welcoming webinar will help you get oriented and discover the resources and support available through PMSF.
We’ll introduce you to important resources for understanding Phelan-McDermid syndrome, navigating medical care, and finding reliable information to share with your child’s care team. Most importantly, you’ll learn where to turn when questions come up and how PMSF can support your family along the way.
Still Need Help?
If you would prefer to meet with our Director of Family Support one-on-one, please click here to schedule a time to meet or send her an email at carla@pmsf.org.