Category: Patient Support

Annual Patient Support Group Held at Addenbrooke’s, Cambridge 17th November 2018

Over 35 patients, family members and Genetics staff attending the 2018 VHL UK/Ireland patient event at the Clinical School within Addenbrooke’s Hospital, Cambridge on Saturday 17th November 2018. Doors opened at 10am, in which patients and family members were able enjoy a coffee and meet other patients, before taking their seats for the day’s guest […]

VHL Patient and Family Event – 17th Nov 2018 in Cambridge

Join us at this year’s VHL Patient Support Group – Saturday 17th November 2018, Addenbrooke’s Hospital Cambridge. – Connect with other patients and families – Guest speakers such as genetic counsellors, consultants, research specialists – Patients, family and friends welcome – Lunch and refreshments provided – Open to VHL, BHD and HLRCC patients Suggested donations […]

VHL Research Patient Day 30th June 2018

  On the 30th June a VHL UK/Ireland support and information meeting was held in the Bateson Centre in the University of Sheffield. A group headed by Dr. Freek van Eeden, a Dutch scientist, who is studying this disease and the function of the VHL gene presented aspects of their work to the group. Dr. […]

Support Group in Glasgow 4th November 2017

On Saturday 4th November 2017, we will be holding this years Support Group in Glasgow – Connect with other patients and families – Guest speakers such as genetic counsellors, consultants, research specialists – Patients, family and friends welcome – Lunch and refreshments provided We are also planning on having a dinner afterwards, as an informal […]

Dublin Support Group Meeting April 3rd 2017

Dublin Support Group Meeting When: April 3rd @ 12.30-4.30 Where: Tolka Room in the Centre for Learning & Development (CLD), Tallaght Hospital Guest Speakers for the Day Joyce Graff: President and Host at Powerful Patient/ Former Founder and Director of VHL Alliance Mike Kelly: Counsellor with the Irish Kidney Association since 2006 Looking forward to […]

Second Support Group Meeting held in Saint Mary’s Hospital, Manchester, October 2016

30 people + 1 dog attended our second arranged support meeting at Saint Mary’s  Hospital, Manchester. – Connect with other patients and families – Patients, family and friends welcome – Lunch and refreshments provided Guest speakers included researchers, genetic counsellor team, charity members and consultants: 10.00 – Registration – Tea & coffee 11.00 – Welcome […]

First Support Group Meeting held in Guy’s Hospital, London

28 people attended our first arranged support meeting at Guy’s Hospital, London. 10.30 – Session opens – Registration – Tea & coffee provided 11.00 – Welcome 11.00 – Pre-implantation Genetic Diagnosis by Alison Lashwood, Clinical Lead PGD at Guy’s Hospital – Slides 11.45 – VHL & Research by Carl Spickett, part of Professor Eamonn Maher’s […]