The Radio 4 appeal has helped keep our helpline open, directly providing information and support not available anywhere else to individuals, families and TO THE professionals trying to help them.
Our Radio 4 appeal raised £4,334 for our helpline.
Ehlers-Danlos Support UK works nationwide to support those living with any of the Ehlers-Danlos syndromes (EDS), a group of connective tissue disorders with widespread, often debilitating symptoms. The average time to diagnosis in the UK is 10 years so people spend a long time trying to find out what is wrong with them, often struggling to get the correct treatment until they do.
Our helpline is a lifeline for many people navigating the pathway to a diagnosis or looking for advice on managing their symptoms. It receives over 3500 phone and email requests for help each year but we only have the capacity to deal with a fraction of these. Our longer-term aim is to answer 90% of calls the first time.
The appeal has also helped us to apply for additional funding. Most funders look for you to fund some of the work yourself, even if it’s a small proportion. Thanks to the R4 appeal, we have been able to apply for some grants to fund the helpline as we can show that we have raised some money ourselves. It’s a great platform having opened more funding doors towards expanding the helpline, and to plan how we might improve the quality of the service through asking users to tell us about their experience shortly after their call.
One person who used the helpline said "The help and advice given was truly excellent and the person I spoke to was kind and very professional." Another said "You’ve been great at helping me on the diagnosis journey and for giving me helpful tips on managing my condition/ symptoms to get the best out of life. Many thanks!"
We would like to thank Βι¶ΉΤΌΕΔ Radio 4 listeners for their support in keeping this vital service open.
You can find out more about the charity .