Empowering Families, Advancing Awareness: Pitt Hopkins UK
Raising awareness of Pitt-Hopkins syndrome (PTHS) among healthcare professionals and providing vital support to families affected by the condition.
Established as a UK charity in May 2016, it is governed by nine trustees, several of whom have family members with PTHS. PTHS is an extremely rare neurodevelopmental disorder characterized by delayed motor development, severe intellectual disability, and often non-verbal or limited speech capabilities in children. Common associated challenges include severe constipation, reflux, seizures, daytime apnea, and hyperbreathing.
The charity's mission is twofold: to increase awareness among healthcare providers for early diagnosis and to connect parents of children with PTHS through social media platforms. Fundraising efforts are aimed at supporting families, disseminating updated information, and promoting research into breathing anomalies and autonomic system dysfunctions that significantly impact the quality of life for those with PTHS.
If you'd like to make a donation to support Pitt Hopkins UK, head to their Wonderful profile page. You can also fundraise for Pitt Hopkins UK in the knowledge that every penny you raise will reach the charity:
