Vascular EDS Steering Group

VEDS Steering Group

The VEDS Steering Group helps to shape the future of the charity as it continues to grow providing support, guidance, and overseeing the progress of all community based projects including events and research in the UK.

Steering committee aims:

• Provide input based on their direct experience of vEDS;

• Give strategic direction;

• Support the charity;

• Enable more people diagnosed with vEDS to fulfil their potential by working to address issues at the earliest possible stage through the VEDS Support Programme.

The steering group usually meets at key stages during the course of a project and influences strategic decisions including reviewing and advising on vEDS research proposals.

Avene Colgan

VEDS Diagnosed

Avene was diagnosed with vascular EDS in 2012 and joined Annabelle's Challenge in May 2022.

Avene is a scientist and works in biotech focusing on the discovery and development of new drugs.

"By joining the steering group at Annabelle's Challenge I hope I can combine my experiences both as a drug discovery scientist and as a vEDS patient to bring a unique perspective and help the vEDS community".
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Gemma Hasnaoui

VEDS Diagnosed

Gemma was diagnosed with vEDS in 2016 and joined Annabelle’s Challenge shortly afterwards. She is currently working as a junior doctor and hopes to start training to be a GP soon.

"I would love to be able to take advantage of my role as a doctor to help bridge the gap between vEDS patients and healthcare professionals."
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Sophie Leftley

VEDS Diagnosed

Sophie is the regional coordinator for the Yorkshire vEDS support group.

She is a retired GP and public health doctor. Sophie was diagnosed with vascular EDS in 2012 after a series of arterial dissections and joined Annabelle's Challenge in May 2017.
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Ryan Winter

VEDS Diagnosed

Ryan joined Annabelle’s Challenge in October 2020 and was diagnosed with vascular EDS in 2010.

Ryan is a mortgage advisor and joined the VEDS Steering Group in November 2022.
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Surjeet Manku

VEDS Carer

Surjeet joined AC in December 2016, three generations of his family are affected by vascular EDS.

Surjeet is a retired police Chief Superintendent with 30 years service. He has a wealth of experience working with partner agencies and local communities.

In 2013 he was awarded the Queens Police Medal for his contribution to policing and transforming the way in which the police engaged with communities.
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Jacqui Fish

VEDS Carer

Jacqui joined Annabelle's Challenge in November 2014.

Her son was diagnosed with vascular EDS in 2005.

Jacqui is a volunteer regional coordinator for Annabelle's Challenge in the South East and is also a community first responder.
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Holly Rawlings-Taylor

VEDS Carer

Holly is our advocate for young adults and children touched by vEDS and supports her mum who has recently been diagnosed with vEDS.

She is a Young Ambassador at Action for Children, Membership Assistant at Coeliac UK and achieved the Gold Duke of Edinburgh Award. Holly also volunteers at a youth club which supports young people and those with disabilities or difficulties.
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Katy Stern

Lead ICC Advanced Nurse Practitioner

As part of her role Katy continues to develop Inherited Cardiac Condition (ICC) services at University Hospitals of North Midlands, and has recently set up an ICC genetics clinic and one stop screening clinic at UHNM.

Katy has a particular interest in aortopathies, and has experience carrying out aortopathy clinics, continuing to develop the aortopathy service at UHNM. She has participated in delivering presentations for various GP, Registrar and MSc training programmes and has recently completed an MSc in Advanced Professional Practice (Genetic Healthcare) at Plymouth University.
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Claire Green

Genetic Counsellor

Claire Green is a registered genetic counsellor working in the EDS National Diagnostic Service in Sheffield. Claire specialises in working with individuals and families with the rare types of EDS.

She has extensive experience in this area as the EDS service sees substantial numbers of patients with classical EDS and vascular EDS as well as patients with all of the very rare types of EDS.
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Jessica Bowen

Genetic Counsellor

Jessica is a registered genetic counsellor based at the EDS National Diagnostic Service in Sheffield.

Jessica provides essential counselling to give people information about genetic conditions and how they are inherited, and works very closely with the clinical geneticists.
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Tammy Kammin

Genetic Counsellor

Tammy Kammin is a registered genetic counsellor at the EDS National Diagnostic Service in Sheffield.

Tammy's role is to provide support and genetic advice to families affected by the rarer types of EDS.
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Juliette Harris

Genetic Counsellor

Dr Juliette Harris is a specialist genetic counsellor for the London-based EDS National Diagnostic Service.

As well as providing routine genetic counselling for rare types of Ehlers-Danlos syndromes and aortopathies, Juliette is also involved in research projects and is particularly interested in the impact that patient involvement and self-advocacy has on improving outcomes for people with vascular EDS.
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