EDS Patient Involvement Opportunity

[Wendy39]

***HeadsUp EDS Patients #InvolvementOpportunity***

***Have your say in designing future research on childbearing with hypermobile Ehlers-Danlos syndrome***

Some researchers, including Dr Sally Pezaro, have recently been granted funding to do some research and professional & public engagement on the topic of Ehlers-Danlos syndrome or Hypermobile Spectrum Disorder.

The funding will enable them to:

1.Conduct two international surveys (one with women with hypermobile Ehlers-Danlos syndrome (hEDS) or Hypermobile Spectrum Disorder (HSD) about childbearing, and the other with maternity staff)

2.Spend some time with relevant people/organisations to develop ideas and co-produce great things together

3.Host a public engagement event

The researchers are requesting women's support in helping to develop the survey questions. We know this is a particular passion for those living with hEDS or HSD, so please do spend 5 minutes giving feedback if you can.

You can read more about the work and have your say by visiting Sally's blog page:

sallypezaro.wordpress.com/2...