Familial paraganglioma syndromes are complex disorders and more common than previously thought. Our understanding of these disorders has grown significantly over the last 20 years; however, diagnosis, treatment and management can still be challenging, both for the patients and their health care professionals.
The morning will include talks from experts around the UK to cover an overview of the SDHx conditions, their diagnosis and screening. In the afternoon, the focus will be on the Welsh experience, including some facilitated workshops to bring together interested health professionals and patients from across Wales to learn, share experiences and explore how the service provision for this group of patients could be improved.
The event will be open to MDT members and trainees who would like to learn more about familial paraganglioma syndromes, such as endocrinologists, endocrine and head and neck surgeons, paediatric endocrinologists, radiologists, speech and language therapists, genetic counsellors and clinical geneticists, to name only a few.
FREE to attend but registration is essential as places may be limited. Please register via Eventbrite: https://tinyurl.com/y62wt3o8
Further information and the programme will be sent out in due course.