Charity Christmas cards available! Thank you Hawkins\Brown for the design and production of these beautiful cards 💙 Please contact [email protected] to order

Wow, this is awesome!

I'm so chuffed to see my best friend's epic challenge on the front page of the Petersfield Post. She's running 100 miles for the charity that supports families like ours. What a legend/nutter! Petersfield Post CCHS UK centurionrunning HOKA 🏃‍♀️ justgiving.com/sarah-page43

Today is Rare Disease Day and it’s a day to raise awareness for the 300 Million people in the world with over 6000 rare diseases. If you or a loved one have a rare disease write it in the comments and make it seen. #RareDisease #RareDiseaseDay #RareDiseaseDay2023

Are you ready to share your colours 💚💙💜 this #RareDiseaseDay? Show your support by sharing our pledge cards on your social media channels. They are available in 8 languages! 👉 rarediseaseday.org/downloads/

We're offering oxygen concentrator grants for families living with CCHS, so they don't have to worry about the huge extra cost of oxygen, which can be prohibitively expensive. We hope families living with CCHS can enjoy a well-deserved holiday!

A special shout out to my best mate who works full time, has young kids, and yet is squeezing in some gruelling training for a 100-mile running race to raise money for CCHS UK What a legend & all-round good egg!🥚 #internationalwomensday #iwd2023 Fundraising link in bio

We're very excited to announce our new website has gone live! Please click the link below to check it out 👇 cchs.uk

Huge congrats to Chris Gulliver, Elliott Peacock and Pete Holmes from Netmatters. They ran the #londonlandmarkshalfmarathon today for CCHS UK and totally smashed it! London Landmarks Half Marathon Netmatters Well done guys! 👏👏👏 There is still time to donate: tinyurl.com/5x74hy34

Congrats to Pete Holmes from Netmatters who ran the #LondonLandmarksHalfMarathon yesterday! 🏃🏻‍♂️ London Landmarks Half Marathon #LLHM2023 #MedalMonday

A woman from Redditch is fundraising for life changing surgery for her daughter. bbc.co.uk/news/uk-englan… bbc.co.uk/news/uk-englan…

Listen to this fantastic interview with six-year-old Sadie's parents. They're talking about the operation she's due to have in a couple of weeks, which they hope will give her more independence and a better quality of life. Tune in at 3:10:30: bbc.co.uk/sounds/play/p0…

Fantastic to see an article about my best friend in the The News, Portsmouth She is running 100 miles along the South Downs Way in less than a month! EEK!🏃‍♀️ Raising money for #charity CCHS UK which supports extraordinary people like my son CCHS UK portsmouth.co.uk/health/hampshi…

Today is International Nurses Day. A day to celebrate all the wonderful nurses out there who care for people with CCHS 💙 #IND2023

Well done to fundraisers this weekend who organised a truly hair-raising day! In collaboration with Uni of Nottingham #WeAreUoN rugby teams, Jonny Felstead raised over £1,000 for CCHS UK by cutting hair & doing a BBQ. Well done all - we love the #greenandgold hair! 💇‍♂️ UoN Rugby Union Club University of Nottingham Sport

The incredible Sarah Page. Running 100 miles along the #southdowns for CCHS UK justgiving.com/fundraising/sa…

My best mate and precious little boy couldn't be more deserving of this front page splash in The Portsmouth News! Pagey is running 100 miles along the South Downs Way and has raised over £7k for CCHS UK She's a legend and an inspiration! The News, Portsmouth centurionrunning

Huge thank you to this wonder woman, Sarah Page, who has raised nearly £11,000!

Huge congrats to Darren, who ran the Great South Run today for CCHS UK. Here he is with little CCHSer Charlie, who cheered him on at mile nine! There's still time to sponsor him, so please do! Great Run #fundraising #GreatSouthRun #GSR justgiving.com/page/darren-wa…

Out of a global population of over 8 billion, CCHS affects around 1,500 people, so it definitely qualifies for #RareDiseaseDay This special day is focused on raising awareness of rare diseases and their impact on people's lives. And it's on 29th Feb - the rarest day of all! 💙