Principal Genetic Counsellor in rare Ehlers Danlos Syndromes

The post holder will be responsible for genetic counselling for individuals with rare inherited connective tissue conditions with a focus on the rare, monogenic Ehlers Danlos syndromes (EDS). They will contribute to service development as well as initiation and progression of research activities conducted within the EDS service. They will support colleagues within the genetic services in the catchment area of EDS service (South of England and Wales). The post holder will lead on patient engagement events and materials for patients as well as being involved in service development. They will also be expected to be involved and lead on research activities as discussed with the EDS lead. The post holder will have specialist knowledge in Ehlers Danlos syndromes and related inherited connective tissue conditions contributing to the delivery of a high-quality genetic counselling service to individuals and families with or at risk of inherited connective tissue conditions. They will work within the AGNC code of Ethics and maintain GCRB/AHCS/HCPC registration.Main duties of the job 1 - Clinical Expertise Take responsibility for providing expert genetic counselling for patients and families with rare monogenic EDS types and other inherited connective tissue conditions. This will include seeing patients and their families both in person, on telephone and through video consultations. They will also be expected to develop an area of expertise within Ehlers Danlos syndromes and other inherited connective tissue conditions. The individual will work closely with all clinical colleagues in the EDS service and inherited connective tissue disorder service. Provide information on the care of other family members including identifying at risk relatives and advising on how they could obtain genetic counselling or screening., Take an active role in education through preparation, interpretation and presentation of scientific articles and cases at genetic counsellor team meetings, departmental journal clubs, education sessions and study days. Lead of patient education events such as patient information evenings/ newsletters. 3. Management Responsibilities To take a significant role in supporting EDS service lead and GC leadership team in leading the genetic counselling team in line with the strategic direction of the department. Participate in organising, chairing, and taking minutes of meetings. Keep and accurate record of leave requests and ensure adequate clinical cover is available.

London North West University Healthcare NHS Trust (LNWH) cares for the people of Brent, Ealing, Harrow and beyond. Our team of more than 8,200 clinical and support staff serve a diverse population of almost one million people. We run major acute services at:

• Northwick Park Hospital: home to one of the busiest emergency departments (A&E) in the country. The hospital provides a full range of services including the country's top-rated hyper-acute stroke unit and one of only three hyper-acute rehabilitation units in the UK
• St Mark's Hospital: an internationally renowned specialist centre for bowel disease
• Ealing Hospital: a busy district general hospital providing a range of clinical services, as well as 24/7 emergency department and urgent care centre, and specialist care at Meadow House Hospice
• Central Middlesex Hospital: our planned care site, hosting a range of surgical and outpatient services and collocated with an urgent care centre.
We are a university teaching NHS trust, in recognition of the important role we play in training clinicians of the future and bringing the benefits of research to the public.