Cure CLCN4
@CureCLCN4We are a UK-registered charity (reg. no. 1190344) aimed at providing support, raising awareness and funding medical research for effective treatments for CLCN4.
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🌟 Donate & make an impact! £20/month helps provide essential resources and support for families, raising awareness about CLCN4-condition. As thanks, you'll receive: a free online fundraising pack & a thank you note from families 💌 Donate now 👉checkout.justgiving.com/fn0fvu39f8
🌟 Join our Monthly Donation Program! Just £/$50 a month helps us host events to drive vital research and connect families living with CLCN4. Together, we can build a supportive community and foster significant advancements. 💙 Make a difference today! 💫 checkout.justgiving.com/fn0fvu39f8
🌟 Make a Difference with £100/month to Cure CLCN4! Your generous donation supports vital research on CLCN4, moving us closer to better care. 💙 Plus, you'll receive: 🎟️ VIP access to our Conference & Dinner 🎁 Exclusive merch 🎉 All lower tier perks! donate.justgiving.com/charity/cure-c…
🌟 You can now support Cure CLCN4 with Recurring Donations! Whether you give £100+ to fuel crucial research 🔬 or £5 for your daily coffee ☕️, every contribution matters. Plus, we have special thank-you gifts for you! 🎁 Join today: cureclcn4.org/recurring-dona… #cureclcn4
👏 Huge shoutout to Luca and Max for powering through the Venice Marathon! Their determination is inspiring! 🌟 Let’s keep cheering them on and help them reach their £5,000 target to fund CLCN4-research 🏃♂️ justgiving.com/page/lucatrill…
👟Luca's back! This time with Max, tackling the Venice Marathon on Oct 27. In just 13 months, they've raised £24K for Cure CLCN4, helping families fight this rare condition. Let's help them go even further! 💪 👉 Support their run & make a difference: justgiving.com/page/lucatrill…
We're thrilled to welcome Anna, our new Communications & Outreach Intern at Cure CLCN4! 🌟 Anna, a recent Psychology & Cognitive Neuroscience grad from Nottingham, embodies our spirit of patient-driven research. Let’s give her a warm welcome! #cureclcn4
Don't forget to download the Cure CLCN4 Welcome Pack, filled with key information & resources to help you navigate a diagnosis of CLCN4-related condition 💜 Click here to download 👉 cureclcn4.org/wp-content/upl…. More languages coming soon! 🌏 #cureclcn4 #clcn4welcomepack #raredisease
🔊 Exciting News! Our new Cure CLCN4 Welcome Pack is here! 🌟 Packed with key info on CLCN4's biology, diagnosis & symptoms and much more! A must-have for families navigating CLCN4-related condition. Download now 👉 cureclcn4.org/wp-content/upl… #WelcomePack #CLCN4Resources
🚀 Join our mission to make a difference! We're looking for a Research & Communications Intern with a passion for science and patient advocacy🧬 Apply today and help us advance research on CLCN4-related condition 👉 cureclcn4.org/join-our-team/ #cureclcn4 #wearehiring #raredisease
🌟 One of the biggest ways you can make a difference is by setting up a recurring monthly donation. Setting it up is easy – just click on the donate button on the following link, enter your desired amount & select 'Monthly' 👉 cureclcn4.org/donate/ 💜 #clcn4awarenessweek
There are many ways you can make a difference, for example, by donating, fundraising, or helping raise awareness of CLCN4-related condition. Every effort counts. 💜 Ready to help? Learn more and donate here: cureclcn4.org/donate/ #clcn4awarenessweek #cureclcn4
Looking for ways to make a difference? If you or a loved one are living with CLCN4, you can help by signing up for the CLCN4 patient registry, on @s_searchlight Your participation is crucial for advancing research🔬. Sign up 👉 cureclcn4.org/patient-regist… #cureclcn4awarenessweek
Today we celebrate some of Cure CLCN4's milestones! From the generation of research tools and the award of our first research grant 🔬, to uniting families 💜 and connecting scientists 🤝 through events, we're building a strong community. 🔊 Sound ON! #clcn4awarenessweek
🎯 Our Goals at Cure CLCN4: Raise Awareness, Support Families, & Propel Scientific Research! 💪💡🔬 Sound on 🔊 To learn more please visit: cureclcn4.org #cureclcn4 #clcn4awarenessweek
Teegan, born in 1986, lived years undiagnosed but pursued her dreams relentlessly. From a local café job to a special needs college, she blazed her trail. Now, she lives independently with her dog, Fudge, inspiring many. Read more: cureclcn4.org/meet-teegan/💙#clcn4awarenessweek
Join Gina Tan as she shares the journey & inspiration behind the founding of Cure CLCN4 and how we're striving to make a difference ✨ #cureclcn4 #clcn4awarenessweek #ourstory
CLCN4-NDC is rare—only about 200 diagnosed worldwide, but many remain undetected due to low awareness and limited genetic testing. Let's boost awareness and research to improve diagnosis and treatments. Together, we can make a difference. 💙 #cureclcn4 #clcn4awarenessweek
No two people with #CLCN4 are alike—even in the same family, symptoms can vary widely. Common issues include developmental delays, intellectual disabilities, seizures, behavioural challenges, and speech/language difficulties #cureclcn4 #clcn4awarenessweek
🌟 Kick off the first CLCN4 Awareness Week with us! 🗓️ Throughout this week, we'll be sharing key facts about the condition, uplifting patient stories, and the impactful work of our charity, Cure CLCN4! #cureclcn4 #clcn4awarenessweek
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