22nd November 2018

Annual Patient Support Group Held at Addenbrooke's, Cambridge

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 speakers. The charity ensures that there is plenty of time like this for patients to connect, including lunch and in the afternoon, based on patient feedback that it provides them with the opportunity to share experiences with each other, especially when it may be the first time they have met another VHL, HLRCC or BHD patient.

The day opened with a charity update by Roxanne Bonin, Marketing & Fundraising Officer of VHL UK/Ireland and also a VHL patient, sharing the timeline of the charity since 2014 when it was relaunched and its growth during that time. The charity is now able to offer patient support and events such as this and funding for research, largely due to fundraising.

Prof Eammon Maher provided an informative research update, detailing why the missing VHL gene enables tumours and cysts to grow and areas of research that are currently being trialled and ways to find out about upcoming trials (visit ClinicalTrials.gov). Prof Maher’s talk

Patients Francesca Bryant and John Hepworth (with support of wife Janice), kindly shared their stories of a life with VHL disease. Francesca has battled several tumours and has channeled energy into fundraising, including her recent charity ball that raised £10,000 for VHL & Macmillan. John shared the story of discovering that VHL was the reason for his families history of health issues and journey it took to get there.

Finally, the day closed with a Panel Q&A session, in which patients and families were able to submit question beforehand or raise on the day. The panel included Prof. Eamonn Maher, Roxanne Bonin, Graham Lovitt (VHL UK/Ireland), Dr Richard Sandford (Consultant Clinical Geneticist), and Mabella Farrer (Genetic Counsellor). Questions included a wide range of subjects from life insurance to Pre-implantation Genetic Therapy.

Thank you to everyone who attended, we hope you found the day beneficial. We would also like to extend a special thank you to the guest speakers and staff of Addenbrooke’s Hospital.

Please contact us if you would like to be adding to our mailing list for future patient events.

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VHL UK/Ireland aims to raise funds via fundraising and donations for research, provide information and support for those affected and raise awareness.

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VHL UK/Ireland is a registered charity in England and Wales 1160381 and Ireland 2010139

Charity Trust No: CT54346