Being a caregiver for a person with a rare disease can take on many forms. Some days you may take the role of parent as medical provider, parent as teacher, parent as financial planner, or parent as advocate. It is a role that can be overwhelming at times but also so rewarding.
This page includes resources to help with the daily care of your child with Phelan-McDermid Syndrome. Over the course of your child’s life, you will need to plan for your child’s education, clinical care, long-term finances, the transition to adulthood, legal matters, medical benefits, and more. These links can get you started on your plans.
Note that services and regulations differ between states, regions, countries. It is often the people closest to the geographical area who know the local resources best. You can always contact your Regional Rep or reach out to PMSF staff to ask for help finding a resource or getting you in touch with someone who can help.
If you live internationally, you may find these pages helpful:
+ International Regional Representatives: Contact your regional representative to inquire about local resources or to get you in touch with someone who may have a similar experience.
+ Global Partners These are legally recognized organizations that support PMS families in their international region.
+ International Social Media Groups International groups may find it helpful to share local resources on social media pages.