In the spring of 2008, two families (Victor’s and Christopher’s) co-founded the International Pitt Hopkins Syndrome Support Group on Google Groups, shortly after receiving a diagnosis of PTHS. Theresa, Victor’s mother, and Sue, Christopher’s mother are the managers of this support group. The group now has over 300 families with children with Pitt Hopkins syndrome, from many different countries around the world, including the US, the Netherlands, the UK, Canada, Germany, France, Italy, Poland, Sweden, Ireland, Austria, Switzerland, Spain, Denmark, Norway, Cyprus, Brazil, Australia, New Zealand and Japan.
This group has been created to bring together the ideas, thoughts, and hopes of people caring for loved ones with Pitt Hopkins Syndrome. Pitt Hopkins scientists participating in our consortium for research into PTHS therapeutics have access to our list archives. When joining, please request membership with a statement of your connection with Pitt Hopkins syndrome.
After joining this International Pitt Hopkins Syndrome Support Group on Google Groups, membership may be requested on our “Parents of Pitt Hopkins” Facebook group, designed for parents, guardians, grandparents and direct caregivers of people with Pitt Hopkins syndrome.