Pitt-Hopkins Syndrome Awareness Day

18/09/2025

Happy Pitt-Hopkins Awareness Day everyone! Here is the UK and Ireland’s latest slideshow!

18th September is Pitt-Hopkins Awareness Day! Please share this slideshow to help raise awareness of this ultra-rare neurodevelopmental syndrome.

25/12/2024

Happy Christmas everyone!

18/09/2024

Today is Awareness Day! The 2024 slide show is up on YouTube! Please share it!

This slide show shows some of the beautiful faces of our children with Pitt-Hopkins syndrome in the UK and Ireland and has some facts abou...

20/07/2024

Today’s the day that Coen’s Crew are climbing the highest mountain in Ireland- Carrauntoohiland raising awareness of Pitt-Hopkins syndrome. They have guides to show show the safest ways up and down!
Hopefully there will be photos later!

You can read more about how the fundraising is going here:

Make a donation and help me reach my fundraising target with Give as you Live Donate.

31/05/2024

Pitt Hopkins UK has a board of 9 trustees who each offer their time and skills to serve the community of people caring for someone with Pitt-Hopkins syndrome.
The board usually meet online as we are a geographically dispersed group. The photo was taken at the charity’s first in-person board meeting in April with 8 out of 9 trustees present and it is planned for these in-person meetings to happen at least once a year.
From left to right:
Julie Cooper, Leanne Groves,
Sue Routledge, Melissa Stewart,
Maryrose Brennan, Mark Haywood,
Graham Fiveash, Brian Routledge,
Debbie Bromley (who is not in the photo, and is also a trustee).

17/05/2024

8 years ago we received an email from the Charity Commission telling us that Pitt Hopkins UK had been issued a registered charity number.

Happy 8th Birthday Pitt Hopkins UK!

31/03/2024

Happy Easter everyone!