The Aortic Dissection Charitable Trust has been supporting the growth of the UK Aortopathy and Arteriopathy Rare Disease Collaborative Network, helping bring together specialist centres to improve care, research and collaboration for people living with hereditary thoracic aortic diseases (HTADs) and other rare vascular conditions.
Supported by NHS England, the network provides a national forum to share expertise, discuss complex cases and develop best practice, ultimately improving outcomes for patients and families.
This meeting is worth 4.5 CPD hours. Spaces are very limited, so book your place today.
Network Meeting Programme
| Time | Session | Speaker |
|---|---|---|
| 10:00 – 10:10 | Introduction | Leema Robert, Consultant Clinical Geneticist, Guy’s and St Thomas’ NHS Foundation Trust |
| 10:10 – 10:30 | Challenges for Paediatric Service Delivery | Elena Cervi, Consultant Cardiologist, Great Ormond Street Hospital |
| 10:30 – 10:50 | How to Manage Hypermobility Referrals | Fleur Van Dijk, Consultant in Clinical Genetics, London North West Healthcare NHS Trust and Neeti Ghali, Consultant Clinical Geneticist, Guy’s and St Thomas’ NHS Foundation Trust |
| 10:50 – 11:10 | Genetics Screening Negative Aortic Dissection | Michael Kyriakides, Aortic Dissection Survivor and Trustee, The Aortic Dissection Charitable Trust |
| 11:10 – 11:40 | Refreshments | |
| 11:40 – 12:40 | Case Presentations ×2 (Focus on Diagnostic Dilemmas) | |
| 12:40 – 13:40 | Lunch | |
| 13:40 – 14:40 | Case Presentations ×2 (Focus on Management Dilemmas) | |
| 14:40 – 15:00 | Changes in Testing Criteria | Debbie Morris-Rosendhal, Royal Brompton Hospital |
| 15:00 – 15:20 | Challenges of Setting Up an Adult Inherited Aortopathy Service | Amanda Varnava, Clinical Lead for Inherited Cardiac Conditions, Imperial College Healthcare NHS Trust |
| 15:20 – 15:40 | Refreshments | |
| 15:40 – 15:55 | FBN1 VUS Project | Clara Portwood, Clinical Genetics Fellow, Guy’s and St Thomas’ NHS Foundation Trust |
| 15:55 – 16:10 | Decipher Cardiovascular Genetics Consortium | Speaker TBC |
| 16:10 – 16:30 | Closing Remarks | Graham Cooper, Cardiac Surgeon and Trustee, The Aortic Dissection Charitable Trust |
Call for Case Presentations
We are inviting submissions for case presentations to be discussed during the meeting. Each session will consist of a 10-minute case presentation followed by 20 minutes of group discussion.
We are looking for two types of cases:
- Diagnostic dilemmas – cases where reaching a diagnosis was particularly challenging.
- Management dilemmas – cases that highlight complex treatment or long-term management decisions.
If you have a case you would like to share, please submit a short summary by Friday 18th September 2026 to heretohelp@tadct.org. Selected cases will provide an opportunity to learn from colleagues, share expertise and contribute to improving care for patients with inherited aortic conditions.
