Finding and developing a treatment for a rare disease such as PHTS involves funding research, but this will not be effective on its own. We need to build strong partnerships and networks amongst PHTS clinical practitioners, researchers, and the pharmaceutical and biotech industries. Additionally, building a cohesive and engaged patient community will help provide important support networks and facilitate engagement with the professional community and regulatory bodies.

Please see below some ways to get involved in the broader PHTS community - if you have additional ideas or events to share please do contact us at


Submit a research proposal,
view/join the PHTS network,
find out about events.


Find out how to connect with the broader PHTS community.


Find out about upcoming and recent events for the PHTS community.

Make a donation

Find out how you can support financing  research into a treatment for PHTS.