Newly Diagnosed

“I can’t imagine what you are going through.” You will likely hear this phrase again and again from well meaning friends and family searching for the right words in a difficult time. And it is true. Try as they might, no one can imagine what you are going through except those that have lived it. That’s why we are so glad you have found us online. We understand, we have been there too.

Most likely you’re feeling a mix of complex emotions right now. If you are a parent to an older child and have been searching for a diagnosis over many years, you may feel relieved that there is finally a name to the mystery of your child, but you’ll still need to understand what it all means. If you are a parent of a very young child, you may be overwhelmed by the diagnosis and the thoughts of raising a child with special needs.

Almost all of us need time to come to terms with what this diagnosis means for our child and for our family. The healing process is different for each person and each member of your family. Please know that you are not alone in this journey. There are many here in the support group that have walked in similar shoes. We can provide you important information and support to help you in this new journey.

Our first words of advice: remember that your beautiful child is the same beautiful child he/she was before you heard the words “Pitt Hopkins.” And know that the happiness that they bring will never stop.

Read on for more information about our support and resources…

You’re Not Alone

Parent E-mail List

Pitt Hopkins parents or guardians, join our parent e-mail list to get the latest news from the PHRF, including conference details, the latest on clinical trials, our quarterly newsletter, ways you can get involved and more!

Get counted in our Pitt Hopkins Census by filling out this survey (takes less than 3 minutes).

PTHS Support Group

Our Facebook Group is a place for parents to share triumphs and struggles they experience while caring for loved ones with Pitt Hopkins Syndrome. Our page is designated as a “secret group” to ensure privacy for our families. If you would like to join the parent support group on Facebook, please message us at the Foundation’s page requesting membership and explaining your connection to Pitt Hopkins Syndrome. We will then send you an invitation to join the group.

PTHS Family Registry

Help us to document detailed information about our children that can be used in future research and symptomatic treatment options. Our patient registry is set up to collect, store and curate information to be used for natural history studies, determine prevalence, and link patients with researchers who study Pitt Hopkins syndrome. Join our Family Registry Now!

“Happiness is a choice. You can be bitter or better.

We choose to be better”

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