Join me in supporting real change. Let's support good in the world and make a difference. Help us for The Ehlers-Danlos Society
I've had EDS all my life, but I wasn't diagnosed until I was 23. Sadly this is a very common pattern of misunderstanding, misdiagnosis and often a long fight to get the right diagnosis and support.
I hope that through organisations such as the Ehlers-Danlos Society, more can be done to support people with any of the Ehlers-Danlos Syndromes, and that further research will be able to identify causes and best practice treatments, alongside promotion and awareness-raising.
Where will the money go from our May Fundraiser?
"The Society are currently working with the Ehlers-Danlos International Consortium and our medical and scientific board to build the registry we need to find the answers to the many questions that we have within the spectrum of these conditions. Help us raise the $500,000 we need to launch this project.
We need to learn more about the epidemiology of the syndromes and prove just how many people are living with these disorders. To date, there has been no registry for the Ehlers-Danlos Syndromes and related disorders that has been a collaborative project across all the different forms. We plan to host a registry that will help us with discovery to find the gene for the hypermobile type, to find out how many people are living with the rarer types, learn more about the natural history, and discover the relationship between the many comorbidities."
Just a small donation will go a long way to helping me meet my goal for The Ehlers-Danlos Society, so please do give what you can, even if it's only a few £/$ :)