Step One
Join PWSA (USA)
If your child has recently been diagnosed with Prader-Willi syndrome, PWSA (USA) would love to provide you with a bundle of materials, appropriately called The Package of Hope. They would also like to present you with a free one-year PWSA (USA) membership.
Step Two
Contact ARCA
ARCA’S Prader-Willi Syndrome (PWS) Project is a statewide program offering consultation and specialized case management for individuals with this life threatening genetic disability. They are dedicated to promoting an increased awareness and understanding of PWS. They provide written information, training, conferences, and seminars to individuals and groups interested in learning more about PWS.
Step Three
Organize Your Team
Work with your pediatrician and endocrinologist to form a team of care givers that you can trust. Staying connected with your team and asking questions will help you navigate the care for your child. PWSANM is a great resource and we can help you get this process started.
Step Four
Get Connected
There are many support groups for families and individuals with PWS. PWSANM can help you find these groups and connect with them. The PWS community is an amazing one and we all work together to improve the lives of our loved ones with PWS. Please contact us and find us on Facebook.