What are the latest advances in Ehlers Danlos?

There aren't any major advances. We still don't know what causes every EDS type. Most of the genes are discovered but... What my geneticist told me was: swim and go to physiotherapy. That's what I must do to try and have a life as normal as possible

Eds had just been reclassified. Study's and trials continue to try and discover the gene responsible for eds and to discover a cure

For the first time ever EDS is gaining attention and research is underway all over the world. It's exciting

Honestly, there aren't many. Doctors are learning more about the genes involved, but that's not helpful to patients directly.

So far scientist and researches have found several new types of Ehlers Danlos syndrome, and are currently working on why it is passed on.

There isn't a lot of advances but they are currently doing research

Ehlers danlos has just been reshuffled to clarify the critiria for diagnosis

Education and awareness! I'm comforted by the fact that we have a community of people looking for answers and a willingness to help each other. The advances in bracing, physical therapy, nutrition and accessible data is right at our splinted fingertips. Let's support each other and share information to create the best quality of life possible!

There are a few recent studies about managing pain in EDS through various therapies. The Ehlers-Danlos Society is planning a study on nutrition in EDS and there's a study going on looking for the gene responsible for hypermobile EDS.

Scientists are trying to design a gene editing procedure to help with a clinical cure so people with Eds can produce collagen effictivily

In 2018, the groundbreaking Hypermobile Ehlers Danlos Genetic Evaluation (HEDGE) was launched. The Ehlers-Danlos Society brought together a highly experienced international group of physicians, geneticists, and technical volunteers to form the Hypermobile EDS Genetic Research Network, dedicated to finding the genetic cause, or causes of hEDS.

Of the 14 subtypes of the group of connective tissue disorders known collectively as the Ehlers-Danlos syndromes (EDS), only the hypermobile type does not yet have identified genetic markers. Over 2019 and 2020, the HEDGE study will recruit, screen, and undertake genetic sequencing tests on 1000 individuals who have been diagnosed with hypermobile EDS by the most recent clinical criteria established in 2017.

The HEDGE study would not be possible without the EDS and Related Disorders Global Registry. Launched in July of 2018, the Global Registry is a collection of standardized health information provided by thousands of patients with all forms of EDS and hypermobility spectrum disorders (HSD), allowing researchers to compare and analyze patient data on a much larger scale than possible in individual research studies alone. The Registry has the potential to unlock countless discoveries about all forms of EDS and HSD and lays the groundwork for large-scale research efforts like the HEDGE study.

This study has Institutional Review Board oversight and approval by the Genetic Alliance (IORG0003358) IRB (IRB00003999). The Genetic Alliance Federal Wide Assurance number is: FWA00017292. Protocol EDS002 has been approved by the Genetic Alliance IRB (Federal registration number IORG0003358). Information can be found on this IRB by putting Genetic Alliance in the NAME search field on the Office of Human Research Protections website.

Research is still ongoing.

Sorry there is no cure for ehlers-danlos syndrome but treatment can help you manage your symptoms and prevent further complications