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Vascular EDS Conference 2022

Vascular EDS Conference 2022

14-15 May, 2022

Manchester, UK

200 Delegates

Welcome and Introduction to the VEDS Conference by Jared Griffin, Kay Julier, Dr Glenda Sobey & Jessica Bowen.

Overview of vascular EDS by Dr Diana Johnson, Consultant Clinical Geneticist, EDS Service.

Arterial aneurysm & dissection - investigation & management by Prof Nigel Wheeldon, Consultant Cardiologist & Clinical Director, Cardiothoracic Services.   

Antenatal considerations in vascular EDS by Dr Katherine von Klemperer, Consultant Cardiologist at Barts Heart Centre.

Molecular Genetics and vascular EDS by Duncan Baker, Lead Scientist for Musculoskeletal and Respiratory Genomics Specialist Services.

Dental management in vascular EDS by James Scott, Restorative Academic Clinic Fellow.

Management of vascular EDS - our experience by Dr Glenda Sobey, Lead Consultant, EDS Service.

Annabelle's Challenge - The future by Kate Manku, Trustee Annabelle's Challenge and vEDS parent.

Barriers to care with vEDS in the UK by Kaitlyn Johnson, Taylor Speziale & Charlotte Cowan, Genetic Counsellors.

Vascular EDS Research by Dr Neeti Ghali & Dr Fleur van Dijk, Consultant Clinical Geneticists, EDS Service.

VEDS Clinical Trial - Enzastaurin by Topher Brooke & Nate Massari, AYTU BioPharma.

Patient Advocacy by Dr Juliette Harris, Genetic Counsellor & Clare Stacey, VEDS member.

Living with vascular EDS by Bonnie Jackson, Trustee Annabelle's Challenge and vEDS parent.

Helping families talk about vascular EDS by Claire Green, Genetic Counsellor, EDS Service.

What is the psychosocial impact of living with vascular EDS by Leanne Barrett, Genetic Counsellor.

Wellbeing - Keeping Mentally Healthy by Peter Abbott, Wellness Consultant & Accredited MHFA and Freelance Trainer.

Closing remarks to the VEDS Conference by Dr Glenda Sobey & David Catterall DL, Chairperson Annabelle's Challenge.

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We were proud that Ehlers-Danlos Support UK and Annabelle's Challenge once again jointly hosted a Vascular EDS Conference in the UK with the EDS National Diagnostic Service.

The conference took place on the weekend of 14th May 2022 at the Village Hotel in Bury, Manchester UK.

The programme included a mixture of medical presentations from the EDS National Diagnostic Service and an opportunity for patients and families touched by the condition to meet others, share experience and form lasting friendships.

Delegate tickets were FREE for adults and children affected by Vascular EDS who attended the conference on Saturday and Sunday and included:
  • Kids & Teens Club hosted by Theatre Dance Studios 
  • Lunch on both days
  • Evening dinner sponsored by Aytu BioPharma
  • Mid-morning and afternoon snacks
  • Group excursion in our exclusive carriages on the East Lancashire Railway

Conference Programme

Saturday 14 May

Conference Programme Topic Speaker
08:00 Registration and Coffee in the Inspiration Suite Hub Café
09:15 Welcome and Introduction Jared Griffin, Christina Fallows, Kay Julier & Jess Bowen
09:30 Chair’s opening address Dr Glenda Sobey
09:40 Overview of Vascular EDS Dr Diana Johnson
10:00 Arterial aneurysm & dissection – investigation & management Prof Nigel Wheeldon
10:20 Antenatal considerations in Vascular EDS Dr Kate von Klemperer
10:40 COFFEE BREAK
11:00 Molecular Genetics and Vascular EDS Duncan Baker
11:20 Dental managament in Vascular EDS James Scott
11:40 Management of Vascular EDS – our experience Dr Glenda Sobey
12:00 LUNCH
13:15 Annabelle's Challenge Kate Manku
13:25 Barriers to care with VEDS Kaitlyn Johnston, Taylor Speziale & Charlotte Cowan
13:45 Vascular EDS Research Dr Neeti Ghali & Dr Fleur van Dijk
14:15 VEDS Clinical Trial - Enzastaurin Christopher Brooke & Nathaniel Massari
14:35 Patient Advocacy Juliette Harris & Clare Stacey
15:05 COFFEE BREAK
15:30 Living with Vascular EDS Bonnie Jackson
15:50 Helping families talk about Vascular EDS Claire Green
16:10 What is the psychosocial impact of living with Vascular EDS? Leanne Barrett
16:30 Wellbeing – Keeping Mental Healthy Peter Abbott
17:00 Closing Remarks Dr Glenda Sobey & David Catterall
17:15 Close
19:00 Welcome Drinks Reception
19:30 REDS4VEDS Gala Dinner

Sunday 15 May

Conference Day 2 Topic
09:00 Coffee in the Inspiration Suite Hub
09:30 Genetic Counsellor led workshops Small discussion groups for people with vEDS, or their family members
11:00 COFFEE BREAK
11:15 Free excursion to the East Lancashire Railway Coach transfer to the East Lancashire Railway
12:00 LUNCH
15:00 Village Hotel Conference close
Conference Programme

Village Hotel

The Village Hotel has a limited number of rooms available for the conference weekend.

Alternatively, a choice of nearby hotels are located within a short 10-15 minute cab / Uber ride from the Village Hotel: Premier Inn, Bury and Travelodge, Bury

Kids & Teens Club

Families will be most welcome at the conference and activities will be provided by the Theatre Dance Studios. 

They will be providing a variety of sessions including dance, drama, singing, performing arts and arts and crafts. We hope this will allow parents to fully participate in the conference. 

Please note we can not accept children under the age of 4 into the Kids and Teens club.

Evening Dinner

You are invited to join us and VIP guests on the red carpet for a sparkling reception at 7pm.

At 7.30pm take your seats in the Inspiration Suite for a 3 course dinner, disco and celebrations.

The evening dinner is generously sponsored by Aytu BioPharma and is free to attend for Vascular EDS members of Annabelle's Challenge and EDS Support UK.

Dress code: Smart casual.

Conference Excursion

Sunday 15 May

Free excursion on the East Lancashire Railway

Join us on a short coach transfer to the platform at the East Lancashire Railway where our exclusive carriages on the vintage steam train will take us on a journey from Bury at 11.55am to Rawtenstall and back.

During the train ride a packed lunch by Olive's Kitchen will be served as you mix and network with your fellow Vascular EDS members before returning to Bury at approximately 1.39pm.

Our group will then have a tour of the nearby transport museum before heading back to the hotel at around 3.00pm. 

Please note this excursion is subject to availability and change.

Airport Transfers

All International conference delegates arriving at Manchester Airport will be greeted on arrival and transferred by Nolan Airport Services direct to the Village Hotel. 

Your journey from Manchester airport to the conference venue will take approximately 40 minutes.

If you would like to visit London or Europe the nearest train station is Manchester Piccadilly with frequent trains operated by Avanti West Coast. 

The approximate journey time is just over 2 hours from Manchester to central London & St Pancras International. You can also book tickets via trainline. 

Village Hotel, Manchester UK

Village Hotel Club, Waterfold Business Park, Rochdale Rd, Bury BL9 7BQ

Main Sponsor

Grant Funders

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