New Phelan-McDermid Syndrome Foundation members become part of a rapidly growing globally engaged organization with proactive members who share the same mission: “To improve the quality of life of people affected by PMS worldwide by providing family support, accelerating research and raising awareness”.
Click one of the links below to begin the process of becoming a member or updating your contact information.
ENGLISH .......... ESPANOL .......... FRANCAIS .......... ITALIANO .......... DEUTSCH .......... PORTUGUÊS
5 REASONS WHY IT'S IMPORTANT TO BECOME A FOUNDATION MEMBER
It's free of charge and you'll realize many benefits. Among them:
Meet new families that are just like you
-- Your Regional Representative will help you get in contact with other families in your area
-- He or she will also answer any questions you may have, offer guidance and support.
-- Many regions have informal family gatherings throughout the year. If we don't know who you are or how to contact you, you'll miss out on an important opportunity to find support in your unique situation.
Foster research and scientific awareness
-- Being a member is critical to furthering research. Our membership list provides us with the latest number of cases of PMS. That number will give us an opportunity to accelerate research initiatives into Phelan-McDermid Syndrome.
-- As the go-to source of information about PMS for the scientific community, an updated membership list helps us to direct researchers to the ready pool of subjects.
-- Registering with the Foundation is not the same as being a member of the International Registry. And signing up for the registry does not mean you are automatically signed up with the Foundation. Registering with both the Foundation and the Registry will give you the most benefits.
-- Membership in the International Registry is key to compiling a database of medical informaiton for researchers. Go to https://pmsiregistry.patientcrossroads.org to begin the process.
Make an impact on issues important to you
-- Having a clear picture of how many families are affected by PMS will help us to raise awareness of PMS and its related conditions among national and local lawmakers, federal agencies and other non-profits in the special needs community.
-- Knowing where families with PMS live allows us to target key decisionmakers.
-- An updated membership number will help us to persuade donors and funders that we are a group they will want to support.
-- There's strength in numbers as we expand our lobbying efforts at the state and federal levels. It's important that we're able to show lawmakers the impact of decisions or legislation.
Join a growing international community
-- We encourage families around the world to become part of our Foundation. Membership is open to everyone.
-- Our Global Partnership Program works closely with associations in other countries to the benefit of families everywhere.
Stay in touch with the Foundation
-- As a member you will receive every month our PMSF UPDATE newsletter witht he latest news about families, research and the Foundation.
-- You'll also get the latest news and information from the Foundation e-mailed to you about critical topics such as our international conference, research studies or updates on key developments that affect your family.
You can see why it is important to be a member of our PMS community: You not only benefit yourself, but other families in same situations. Being a member means you have joined a growing international network of families who can offer advice, support and influence research to help improve the quality of life for those affected by PMS.
Won't you join today? We look forward to getting to know you and your family. Welcome to our Foundation!