VHL UK/Ireland Charity Objectives:
To relieve the charitable needs of persons who have von Hippel-Lindau Syndrome (VHL) and similar genetic conditions such as Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Birt-Hogg- Dubé Syndrome (BHD) and their families and carers in the UK and Ireland for the public benefit in particular but not exclusively by:
1. Providing support and advice regarding their genetic conditions
2. Providing funds for research into the genetic conditions and for equipment to assist with such research
3. To advance the education of the public in all matters concerning the genetic conditions
Please note the charity is unable to give grants or loans to individuals to help their financial needs. We advise contacting a larger organisation for example:-
Macmillan Cancer Support – Grants and loans
Chances are that if you are reading this page, you or someone you know has been impacted by one of four rare genetic conditions namely VHL, HLRCC, FD or BHD. We are very glad that you are here; to gather information, learn about this condition, and most importantly, to take control of your own, your patient’s, or your loved one’s health.
In our attempt to protect ourselves and our family members, those of us diagnosed with one of these conditions have learned the value of annual screening. If people are going to stay healthy, they have to understand the risks and take action to protect themselves.
Finally, we hope that the VHL UK/Ireland charity will provide you with support and information. From Facebook groups to forums, we encourage you to join and partake. They are wonderful resources!
Thank you for your support and for doing all you can to spread the word about VHL, HLRCC, FD and BHD.
Remember, knowledge saves.
Best wishes,
Graham J Lovitt, Co-Chair
VHL UK/Ireland
Charity constitution
VHL Charity Trustees
Mark Lodge – Trustee, Chair
Dr Antony Horton – Trustee, Co-Chair, Scientific Advisor
Graham Lovitt – Trustee, Co-Chair
Janice Hepworth – Trustee, Co-chair, Treasurer
Kat Chapman – Trustee, Co-Chair
Nancy Molyneaux – Trustee, Co-Chair, Patient Liaison
Roxanne Bonin – Trustee, Co-Chair, Marketing & Fundraising Officer
Charli Lawton – Trustee, Secretary
Frankie Goddard – Trustee, Fundraising Coordinator
John Hepworth – Trustee
Joyce Bonin – Trustee, Online Shop Manager
Kim Vaughan – Trustee, Genetic Centre Liaison
Tantara Fox-Stillwell – Trustee
