Williams Syndrome Foundation UK

Williams Syndrome Foundation UK Williams Syndrome is a rare congenital disorder that occurs sporadically in approx 1 per 18,000 births in the UK. The incidence is approximately 1 in 25,000.

It causes cardiac, physical and mental health problems, learning disabilities including sensory, behavioural, social and processing issues. Williams Syndrome is a rare disorder caused by an abnormality in chromosomes, and shows a wide variation in ability from person to person. Williams People have a unique pattern of emotional, physical and mental strengths and weaknesses. For parents, teachers,

and care workers, learning about this pattern can be a key to understanding a Williams person and in helping them achieve their full potential. It is a non-hereditary syndrome which occurs at random and can effect brain development in varying degrees, combined with some physical effects or physical problems. These range from lack of co-ordination, slight muscle weakness, possible heart defects and occasional kidney damage. Hypercalcaemia - a high calcium level - is often discovered in infancy, and normal development is generally delayed. The Foundation hears of over 75 cases a year - and this figure is rising as publicity spreads.

17/06/2026

Does your child or young person have a health passport? 📋

A health passport is a document that helps healthcare professionals understand your child better. It can include information about:

💚How they communicate
💚What helps them feel safe
💚 Sensory needs and triggers
💚 Medical conditions and medications
💚 Things they may find difficult
💚 How they express pain or distress

For many families, a health passport can also reduce the need to repeatedly explain their child's needs to different healthcare professionals. Instead of having the same conversations over and over again, important information is available in one place for staff to refer to.

Sharing a health passport before a hospital appointment, admission or emergency visit can help staff provide more personalised care and reduce stress for both your child and your family.

Many NHS trusts provide their own templates, often called a health passport, hospital passport, learning disability passport or communication passport.

If your child/young person doesn't already have one, try searching your local NHS trust's website or asking your GP surgery, learning disability nursing team, paediatrician or hospital for a template.

💡 Keep a digital copy on your phone so it's always available if you need unexpected medical care.

Has a health passport helped your family? We'd love to hear your experiences in the comments 👇

Here's a good template from the NHS website: https://f.mtr.cool/sbjatbpesx

Our next siblings Zoom chat is on Thursday 25th June at 8pm, where we will be joined by adult members with WS siblings f...
17/06/2026

Our next siblings Zoom chat is on Thursday 25th June at 8pm, where we will be joined by adult members with WS siblings for an informal chat about the positives, strengths and challenges of having a sibling with WS. Please email: [email protected] if you would like to join in or find out more. ⁠ ⁠

This week is Learning Disability Week! 💜The theme for 2026 is "Do you see me?" which is all about people with a learning...
16/06/2026

This week is Learning Disability Week! 💜The theme for 2026 is "Do you see me?" which is all about people with a learning disability being seen, heard and valued.

Many people with Williams Syndrome will have a learning disability. A child's development will be delayed which means they may take longer to learn how to walk, talk, and develop other social skills.

With the right support, people with Williams Syndrome can live a fulfilled life, in the way they choose. Physical therapy and speech and language therapy can also help people with Williams syndrome develop as they grow up.

We have a number of useful videos, guidelines and resources on our website: www.williams-syndrome.org.uk

If you would like to get involved with Learning Disability Week you can:
💜Talk about and celebrate the amazing things that people with a learning disability are doing in your community.
💜Spread awareness of Learning Disability Week.
💜Download and share Learning Disability Week resources.
💜Campaign with Mencap to challenge the barriers that people with a learning disability face.
https://www.mencap.org.uk/learningdisabilityweek

16/06/2026

Watch this brilliant video featuring Ana, talking about Williams Syndrome for New Directions Rugby Ltd and 🤩

A reminder of our webinar coming up on Social Behaviour and Vulnerability in people with Williams Syndrome, with Profess...
14/06/2026

A reminder of our webinar coming up on Social Behaviour and Vulnerability in people with Williams Syndrome, with Professor Debbie Riby and Grace McCabe on Thursday 18th June at 7pm. Please email [email protected] to book your place.

Say a big 'thank you' to your teachers, teaching assistants, nursery staff and more with one of our WSF thank you cards....
11/06/2026

Say a big 'thank you' to your teachers, teaching assistants, nursery staff and more with one of our WSF thank you cards. 🙏
Just £3.50 for a pack of 10! All funds from the sale of the cards go directly to the Williams Syndrome Foundation.
Visit our online shop at: https://williams-syndrome.org.uk/product/wsf-thank-you-cards/
Blank Inside.
Tent fold.
148 x 105mm

A reminder of our member events still to come in June🌞❤ Northumbria - Hall Hill Picnic and Farm Visit❤ Bristol - Bristol...
11/06/2026

A reminder of our member events still to come in June🌞

❤ Northumbria - Hall Hill Picnic and Farm Visit
❤ Bristol - Bristol Zoo
❤ Midlands - All Ability Cycling
❤ Herts & Beds - Summer Meet-up

All WSF members and families are welcome at any of our events across the UK regardless of where you live. If you would like to attend, please email your Event Coordinator or fill out the online booking form - https://forms.office.com/r/WP3KkWGvx2

A coupe of places have become available for a funded respite break at Calvert Trust Devon, for our adult members (18+) A...
11/06/2026

A coupe of places have become available for a funded respite break at Calvert Trust Devon, for our adult members (18+) AND a parent/carer🌞

Join us on an action packed holiday where you will have the opportunity to meet new friends, try new experiences and have lots of fun and laughter along the way!

Calvert Trust enables disabled adults and children, together with their families and friends, to achieve their potential through the challenge of outdoor adventure and in the countryside.

⭐Calvert Trust Devon
24th - 28th August 2026.

Please email [email protected] to register your interest.

To be eligible to apply for a holiday your family membership subscription must be in place and paid up to date. Travel to and from each location is not provided.

Address

Portsmouth

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+442085671374

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