Share your story

Help support others by sharing your story – how you got diagnosed and what it is like living with PHTS.

One of the challenges of having a rare disease like PHTS is that it can be hard to find others who know what you are going through. If you would like to share your experiences on our blog, please get in touch and we will send you a short form to fill out.

We won’t post anything on the site without your permission. Read our privacy policy here.

Email us on contact@ptenresearch.org with ‘PHTS stories’ as the subject line if you are interested.

Here are some websites run by people with PHTS that offer support

PTEN UK & Ireland - https://ptenuki.org

The PTEN Foundation (US) - https://ptenfoundation.org/

PTEN World (US) - https://www.ptenworld.com/

Beating Cowden’s (US; blog) - https://beatingcowdens.com/

PTEN Italia (Italy) - http://www.ptenitalia.org/home

CoBaLD (Germany) - http://www.shg-cobald.de/

Sign up for our newsletter