Kleefstra Syndrome #kleefstra
@KleefstraSynd
Followers
126
Following
332
Media
37
Statuses
229
For all the Kleefstra syndrome families and professionals. Drop us a tweet and we'll do our best to help or to give you information about someone else who can.
Joined June 2021
We're here to help. We can also try and direct you to other people who can help. We are part of the Kleefstra community, and we know how important support is, whether you are at the beginning of your journey with Kleefstra, or fully experienced with the syndrome.
1
1
4
KS Day is just around the corner, so @IDefineorg are making a slideshow to celebrate our loved ones! Use this easy form to submit a photo by September 10 and tell IDefine what makes you proud of them. 👉 https://t.co/Ft45YWVL8J
#kleefstrasyndrome #kleefstraawareness
0
0
0
Exclusively for @Unique_charity members: Zoom presentation from Kym Winter @RaremindsUK just before #rarechromoday exploring the emotional challenges of having a child w/a rare chromosome or gene disorder. To book, email admin@rareminds.org #genetics #raredisease #mentalhealth
0
5
14
Tomorrow is #RareDiseaseDay! Join the Global Chain of Lights! 🌍 The rare disease community will unite to spread solidarity with monuments, offices, schools, and homes lighting up in the Rare Disease Day colours! Don't miss out on Feb 29, 7 PM local time! #LightUpForRare
3
174
340
Only a few spaces left at our free Anxiety Support workshop on Wednesday for parents of disabled children aged 0-5 in England! Book your place to learn about the different types of anxiety, their signs and causes, and practical ideas to help your child 👇 https://t.co/xGcFumtugb
0
5
3
If you want to claim DLA or Child Disability Payment for your child but have any questions about the process, join our Q&A this Thursday to get advice before applying! We’ll be answering questions between 10-11:30 in our Facebook Group. Find out more 👇 https://t.co/apGgkIXJ3D
contact.org.uk
Our families describe Disability Living Allowance (DLA) – or Child Disability Payment in Scotland – as a “life-changing” benefit for disabled children. But claiming it can be tricky, and there are...
0
7
7
Join the Global Chain of Lights this Rare Disease Day! đź’ˇ Let's illuminate awareness and support for those living with rare diseases. Click the link here: https://t.co/fIuYvNVxNQ to get involved! #RareDiseaseDay #LightUpForRare #Awareness
1
48
66
There are now only 2 weeks to go until #RareDisease2024! We love reading all of your stories and seeing the awareness that you are raising. Don’t forget to tag us in your posts and stories. We’ll be sharing lots over the coming weeks. #RareDiseaseDay #StoriesBehindTheStats
0
22
40
Did you know that 1 in 17 people will be affected by a rare condition at some point in their lives? For #RareDiseaseDay we're sharing stats around #RareConditions, and highlighting real stories behind them. Share these figures to help spread the word. #StoriesBehindTheStats
0
14
26
1 in 17 people will be affected by a #RareCondition at some point in their lifetime. This #RareDiseaseDay we are working with our members to raise awareness of these statistics - and the stories of the people behind them. #StoriesBehindTheStats
0
18
41
Want to share your story over #RareDiseaseDay? 📝 We want your experiences to be heard. If you’d be interested in writing a short blog post for our (brand new) website then get in touch: rarediseaseday@geneticalliance.org
1
12
14
Did you know that there are 3.5 million people in the UK living with a rare condition? And that 1 in 17 people will be affected by a rare condition at some point in their lives? Learn more about Rare Disease Day: https://t.co/NA0xcywDdN
#RareDiseaseDay #StoriesBehindTheStats
0
6
14
Join We R Rare, a new Patient Public Involvement Group! MRCC & Biomedical Research Centre seek 12 individuals with rare condition experience in Manchester and the North West. Make a difference! Visit https://t.co/eGEMSEmnKd to find out more
1
12
18
Parent carers shouldn’t have to navigate complex disability services alone. That’s what our Helpful Guide is for! Our free 100-page book is packed with advice to help you access support for your disabled child, from their early years up to adulthood: 👉 https://t.co/gWejuLMFEc
0
11
9
Most disabled students can no longer get Universal Credit due to rules introduced in 2021 — but with our help, hundreds have successfully claimed. If your child hopes to claim UC while in education, join our Facebook Q&A this Thursday for expert advice: https://t.co/r7jNlp4Plx
0
9
4
For families with disabled children, Christmas can be a tricky and stressful time to navigate. To help, the parent carers in our Listening Ear team put together some brilliant tips on how to make Christmas more enjoyable for you and your disabled child 👇 https://t.co/qgQ007MH1C
contact.org.uk
While many people look forward to Christmas with excitement and joy, for families of disabled children it can be a tricky time to navigate.
0
3
4
Even though Carer’s Allowance is deducted in full from Universal Credit payments, it’s still a good idea to claim it. This is because you’ll automatically get Class 1 national insurance credits, which can protect your right to a state pension. Read more: https://t.co/oNjw9AzOAR
0
14
15
Did you know that everyone with a learning disability aged 14+ in the UK is entitled to free annual health checks? This is crucial to identifying any medical issues early on, and can even help shape a young person's SEN or adulthood transition plans. 👉 https://t.co/C6pFQMQj9M
3
29
29
Many parent carers have to navigate a maze of confusing services from day 1 of their disabled child’s life. It’s not easy. That’s why we created our Helpful Guide, a free 100-page book loaded with information and advice for families! Order your copy 👉 https://t.co/gWejuLMFEc
0
12
24