We are delighted to announce the new vEDS Steering Committee for Annabelle’s Challenge.
Working directly for the charity and the community we serve. The steering committee will help to shape the future of the charity as it continues to grow providing support, guidance and oversight of progress of all community based projects including events and research in the UK.
The team is made up of volunteers who are directly touched by vascular EDS including patients, parents and carer s, they are also supported by genetic counsellors from the NHS EDS National Diagnostic Service.
Steering committee aims:
• Bring people touched by vEDS together and build strong relationships in and across our community.
• Speak to people and listen to what they have to say in our vEDS community.
• Commitment to equalities and inclusion.
• A willingness to speak their mind yet be respectful of others opinions.
• Active inclusion in the design and decision making in all aspects that affect and ultimately benefit our community including conferences, events, volunteers and research enabling our community to have a stronger voice.
• Enable more people diagnosed with vEDS to fulfill their potential by working to address issues at the earliest possible stage through our family support programme.
• To devote the necessary time and effort to be an effective committee with meetings in person or via teleconference call / virtual meeting.
Welcome to the vEDS steering team:
Patients:
Gemma, Taylor, Rachel & Georgina
Parents / Carers:
Surjeet, Jacqui & Clare
Genetic Counsellors:
Claire, Jess & Tammy
To learn more about the team: https://www.annabelleschallenge.org/veds-steering-committee