Objectives of VHL UK / Ireland Charity
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:
- Providing support and information regarding their genetic conditions
- Providing funds for research into the genetic conditions and for equipment to assist with such research
- 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
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 and BHD.
Affiliated bodies
The VHL UK/ Ireland charity is affiliated to a number of bodies, being the VHL Alliance & VHL Europa
Founded in 1993, the VHL Alliance provides significant resources for patients, caregivers, researchers, and the medical community.. Whilst its primary focus is to support VHL patients in North America, it also helps patients in other countries to establish their local country charities
VHL UK/ Ireland was founded in 2013 and aims to support patients in England, Wales, Scotland, Northern Ireland and the country of Ireland (Eire).
VHL Europa was founded in 2014 and seeks to act as an umbrella organisation for collaboration between local country VHL Charities and patient organisations across Europe
The Charity is also a member of the following bodies
Charity Constitution
Just click on the link below to read a full copy of the Charity’s constitution
Charity Membership
1. Full Membership
This includes voting rights (one per branch / organisation) and is open to voluntary sector and charitable organisations whose primary aim is to improve the quality of life for people affected by VHL and similar genetic conditions such as BHD and HLRCC.
Membership fee is £50.00 per annum shared with the VHL Alliance
2. Associate Membership
With no voting rights, membership is open to organisations with some responsibility for the provision, commissioning or development of services for the welfare of people affected by VHL and similar genetic conditions such as BHD and HLRCC.
No membership fee.
3. Full individual membership
This includes voting rights, and is open to anyone diagnosed with VHL and similar genetic conditions such as BHD and HLRCC, or directly affected by such a diagnosis including families, friends and carers.
Membership Fee is £10.00 per person per annum shared with the VHL Alliance
Trustees and people making regular monthly donations are automatically members.
Board Minutes
Just click on the link below to read a full copy of the Charity’s Board Minutes