Rare Disease Day 2023: CGF’s takeover of Genetic Alliance UK
Hello! We're Sally, Catriona and Laura from @ChildGrowthUK and we're so excited to be running a Twitter takeover, 10am-11am today with @GeneticAll_UK as part of #RareDiseaseDay #RareDiseaseDay2023 Look out for our CGF tweets on here over the next hour ???????? #CareForRare pic.twitter.com/SFaXZVHv03
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
Here one family member shares the various steps and challenges they took to reach a diagnosis.
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
We're delighted that CGF were able to help in your journey, and to know you have a great relationship with your hospital providing great care #CareForRare #RareDiseaseDay2023 pic.twitter.com/iSGCYVEIxD
This family member's quote shared with the @ChildGrowthUK community highlights the ongoing #CareCoordination issues that growth condition patients and their families face on a daily basis following a diagnosis #CareForRare #RareDiseaseDay pic.twitter.com/mvdLAFB3Um
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
Sharing your story with @ChildGrowthUK is a powerful way to support others going through similar issues & help raise awareness of growth conditions. If you would like to share your story please get in touch with our friendly team at [email protected] #RareDiseaseDay pic.twitter.com/RKZ50Q7SJn
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
If you have queries regarding you or your child’s treatment we recommend you speak to your consultant in the first instance. If you need further advice or a listening ear @ChildGrowthUK and a number of other charities are here for you???????? #CareForRare #RareDiseaseDay2023 pic.twitter.com/SjwB9UaE9N
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
At @ChildGrowthUK we have a range of support for children, adults and families, including our support line on 0208 995 0257, email support at [email protected] and a range of resources, publications and updates on our website https://t.co/vENXLsMrIx #RareDiseaseDay pic.twitter.com/KSu5CCjFKF
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
At @ChildGrowthUK we are privileged to have the following health professionals advise and support us with the work that we do. Our experts help create the information and booklets you see on our website, are regular speakers at our annual Convention and much more #CareForRare pic.twitter.com/nyWXT3boaJ
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
Our @ChildGrowthUK volunteer trustee board governs our charity, with a shared passion to improve the lives of children, adults and families living with growth conditions and those seeking diagnosis. Read more about our Board >> https://t.co/yvrYd0qDDi #RareDiseaseDay #CareForRare pic.twitter.com/Z0mnH1K0UO
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
For #RareDiseaseDay on 28th February @ChildGrowthUK are really pleased to be involved in the online event 'Shining a light on Silver-Russell Syndrome, with our Chair of Trustees Jeff Bolton joining the session alongside experts including CGF Medical Advisor Dr Emma Wakeling. pic.twitter.com/G6vUbcOrs1
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
Join this free event, held online 6pm-7.30pm, to find out about how rare genetic conditions like SRS / RSS are diagnosed and hear about what it’s like to live with Silver-Russell Syndrome >>> https://t.co/VeGZ65Zqjh #RareDiseaseDay #SRS #RSS #CareForRare pic.twitter.com/0lU12U66Qy
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
At @ChildGrowthUK we're keen to see how we can best support those diagnosed with a growth condition or seeking a diagnosis. If you're a health care professional we'd really appreciate if you could spare a few minutes to complete our survey on training https://t.co/VA1ik3Immi pic.twitter.com/iz28BuRemw
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
If you or your family are newly diagnosed with a #GrowthCondition or are simply keen to find out more @ChildGrowthUK have a range of condition specific videos and presentations over on our YouTube channel https://t.co/nNu3ndVO14 #CareForRare #RareDiseaseDay pic.twitter.com/4cF3pYzPId
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
If you have any concerns about your child's growth please do seek advice and support. Speak to your GP / healthcare professional and please don't hesitate to contact @ChildGrowthUK to discuss your concerns #RareDiseaseDay #CareForRare pic.twitter.com/3ZZ6PNOz4d
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
At @ChildGrowthUK we're proud to be supporting #RareDiseaseDay2023 on 28th February and to be part of a community who #CareForRare.
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
Find out more at https://t.co/G5WNnEFslt and check out @rarediseaseuk's Twitter. pic.twitter.com/KkrrOjZ51j
Thanks so much to @GeneticAll_UK for inviting us to be part of their Twitter Takeovers in the build up to #RareDiseaseDay. We've loved sharing our information with you ????????
— Genetic Alliance UK (@GeneticAll_UK) February 16, 2023
Find out more about @ChildGrowthUK's work at https://t.co/vENXLsMrIx #RareDiseaseDay2023 #CareForRare pic.twitter.com/KRVlynloxm
