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 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.

vhl uk ireland support group 8

8th October 2018

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 are £10 per family or per £5 individual.

To book your place, please visit:

29th July 2018

VHL Research Patient Day

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. van Eeden says:

Perhaps rather surprisingly, we are using an unusual laboratory animal, the tiny zebrafish embryo. We were hoping to convince our visitors that zebrafish is nevertheless a very exciting tool to help us understand why VHL is such an important gene and we tried to explain some new ideas of how one might be able to screen for novel drugs that could target the symptoms of this disease. (I hope we didn’t use too much jargon!!).

We had a great exhibition where VHL patients and family members could experience a flavour of the work that is going on in the Centre:  

  • Fluorescent zebrafish VHL mutants in the “Pod”;
  • Drosophila (fruit-fly) work (and smells!) by Iwan Evans.
  • Ffion Hammond did a tour through our fish facility and even taught a few people to do a successful microinjection of zebrafish eggs!

I would like to thank all people involved:

Davide Marchi, Rosemary Kim, Eleanor Markham, Steve Renshaw, Iwan Evans, Ffion Hammond and Philippa Carr for their willingness to offer up a glorious blue-skied Saturday in order to present our work to patients.

Most importantly, I also would like to thank the patients for being there and sharing their experience, for all of us it was really inspiring to talk to you!! I really strengthened our resolve to work hard to translate our knowledge to new therapeutic approaches.

The charity would also like to add its thanks to everyone at the Bateson Centre and everyone who attended on the day – it was an eye-opening experience for us all and even though we might not have understood everything that was said, just to see this kind of research actually taking place was amazing!

13th March 2018

Free personalised T-shirts for VHL Star Fundraisers!

If you will be raising over £1,000 (including € and $) in a fundraising activity, you will receive a personalised VHL t-shirt for your event!

From marathons to mountain climbs, we hope to get you some extra cheers from supporters with your name printed on your shirt.

Simply pop us an email to apply: uk@vhl-uk-ireland.orgvhl-uk-ireland-star-fundraiser-1000-free-personalised-t-shirt-name-printing

13th February 2018

VHL Research Presentation for Patients at Sheffield University

Saturday 30th June 2018

Freek van Eeden carries out research on zebra fish (apparently they have 2 VHL genes) and the preliminary plan is for one of his PhD students to give a talk about the zebra fish, followed by a tour of the aquarium/laboratory. Freek would then talk to the group and give details of the research that he is doing into the precise functions of the VHL gene. He believes that the gene may not only be a tumour suppressor, but that it also acts as a gene repair tool which may be partly responsible for the growth of tumours in VHL patients. There would be the usual time at the end for questions and answers.

This research is providing another important dimension to our understanding of the functions of the VHL gene, which may eventually impact upon the treatment of VHL and other diseases (he mentioned dementia as an example).

Lunch & refreshments will be provided.
Tickets are £5 per person.

Register here

After registering, please ensure you email with your name, address, telephone number and any dietary requirements.

27th July 2017

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 get together, after feedback from last years event.

Suggested donations are £10 per family or per £5 individual. To book your place, please click here to donate and email with your full name(s), address, contact telephone number and dietary requirements.

Click here to register

3rd April 2017

VHL UK/Ireland wristbands in shop

Official Charity Silicone Wristband

From our shop
One size: Adult (12mm x 202mm)
Two Tone Colour Effect : Debossed & Ink filled
Featuring the VHL UK/Ireland colours, logo and text
Made in the UK for us by MPM Wristbands

6th March 2017

Dublin Support Group Meeting April 3rd

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 seeing everybody on the day
– Connect with other patients and families
– Patients, family and friends welcome
– Tea/ Coffee and refreshments provided
RSVP to Sandra Collins @
Email: Or Ph: 0858458443 by call or txt

3rd March 2017

Vixstar Charity Masquerade Ball on Saturday 30th September 2017

ANNOUNCEMENT – Tickets are now on sale for this year’s Charity Masquerade Ball on Saturday 30th September 2017 at Holiday Inn Peterborough West!

Tickets are priced at £45 each or £40 each for a table of 10 and include a welcome drink, 3 course meal, entertainment, photographer and much more.
To order your tickets please visit: All profit made on the night and from tickets will be donated to VHL UK/Ireland and New Ark Adventure Playground. Please share this post – thank you for your support, we look forward to seeing you there!
— at Holiday Inn Peterborough West.

See what we did in Masquerade Ball 2014

27th December 2016

Rare Disease Day February 28th, 2017


Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. On 28 February 2017, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for more research on rare diseases. Over the last few decades, funds dedicated to rare disease research have increased. But it can’t stop there. Rare Disease Day 2017 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. Rare disease patients and families, patient organisations, politicians, carers, medical professionals, researchers and industry will come together to raise awareness of rare diseases through thousands of events all over the world.

Organised by Eurordis


13th December 2016

Ulster Bank account and Euro PayPal donations and fundraising through

Further information:

Donate into Euros

with PayPal connected to Ulster Bank Account

Or you can use the button below However, please note that in order to cover bank fees, VAT and administration charges, charge a fee of 4-5% on each donation.

18th November 2016

VHL UK/Ireland Charity Christmas Cards now in stock

VHL UK/Ireland Charity Christmas Cards now in stock – order yours today!

Support the charity with our bespoke Christmas Cards, only £3.50. Each pack of 10 feature two designs and 10 envelopes. 100% of profit will be donated to VHL UK/Ireland.

Click here to order

22nd October 2016

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

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 from VHL UK/Ireland – Slides
11.30 – Dr Emma Woodward on Research
12.30 – Lunch
13.30 – Fiona Lalloo – Information on PGD
14.00 – Q&A with Kath Wallis/Fiona Lalloo
15.00 – Tea & coffee
16.00 – Session Closes
17.00 – Optional meal at The Rampart Lion

1st June 2016

The Charity is officially registered in Ireland as Registered Charity Number (RCN) 20101039

The charity submitted an application to the Ireland Charities Regulatory Authority (CRA) last year which has now been approved under Section 39 of the Charities Act 2009.

21st March 2016

New 2-year Target of £80,000

The £40,000 fundraising goal has been reached for this financial year. We have been in touch with Prof Eamonn Maher’s Cambridge research team and they have asked if we can continue fundraising towards an even more prominent piece of equipment. We have also offered, as an alternative, to help fund a piece of related research. The Prof said “we really want to ensure that any funding we receive from you is used in the best possible way”. This shows our efforts are treated with great respect and hard earned fundraising and donations are used in only the best possible ways. The VHL UK/Ireland Committee of Trustees on March 21st, 2016 have now set a new 2 year fund-raising target of £80,000 for the financial year ending April 5th, 2017.

20th March 2016

Dave O'Brien + 10 others raise over £7,600 in Wicklow Goal Break 10km

Dave O’Brien and team have raised over £7,600 at the Wicklow Goal Break 10km, a fantastic effort.

14th November 2015

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 research team at Addenbrooke’s Hospital – Slides
12.30 – Lunch provided
1.30 – Update on VHL UK/Ireland from Graham Lovitt & Roxanne Bonin – Charity’s Co-Chairs – Slides
1.40 – Personal HLRCC experience and update on VHL Research from Dr. Tony Horton – Charity’s Scientific Adviser
2.00 – Q&A by Sally Watts, Lead Genetic Counsellor at Guy’s Hospital
3.00 – Session closes
A big thank you to the speakers, to Guy’s Hospital Staff and to Roxanne Bonin and all her family for the arrangements, and all the attendees for making a very enjoyable and informative day.

5th November 2015

Target of Thirty Thousand Pounds - £30,000 Broken

The VHL UK/Ireland Committee of Trustees on Aug 24th, 2015 set a new fund-raising target of £30,000 for the financial year ending April 5th, 2016. It was thought the target sum was ambitious, but achievable.

3rd November 2015

VHL UK/Ireland reaches it's £5,000 target!

Over £5,000 has been raised for VHL UK/Ireland this year, enabling the charity to apply for registered status. All funds are being donated to research into VHL disease and similar conditions BHD and HLRCC by Eammon Maher, Head of the Department of Medical Genetics, Cambridge.

The charity would like to thank all fundraisers this year for all of their hardwork, those currently training for an upcoming event and those who have sponsored, donated, purchased pin badges and t-shirts. Every penny means a tremendous amount to VHL patients and those affected.

Join the ‘celebration’ on the VHL UK/Ireland Facebook page.

2nd August 2015

Glitz & Glamour Ball 2015 raises over £2,750 + £700 in Shop for VHL UK/Ireland!

A Glitz & Glamour Ball raised £2,750 for the charity on Saturday 25th July 2015. The event saw over 240 guests attend to support both VHL UK/Ireland and Alzheimer’s Society, with over £5,500 raised for both charities.

The event took place at Holiday Inn West Peterborough, Cambridgeshire and included a three course meal with drinks, a charity raffle, silent auction, photographer, and more.

Local businesses sponsored tables and donated prizes to the raffle and silent auction.

Many VHL UK/Ireland pin badges, car stickers and t-shirts/vests/hoodies were also sold on the night, raising an additional, fabulous £700.

Read the VHL UK/Ireland blog post for a full description of this highlight of the year

Graham Lovitt, Co-Chair of VHL UK/Ireland “I can only repeat similar words of last year. I would like again to add my sincere thanks to Vicky and her team at Vixstar and also our Roxanne for making a fabulous evening to over 240 people and raising another great sum of money for the charity, and perhaps more importantly, raising awareness of the rare VHL disease.”

Photo credit: Tony Cronin

20th July 2015

£4,995 donation for a L20001 Luna FL Automated Fluorescence Cell Counter

Our £4,995 donation was spent by Eammon Maher, Head of the Department of Medical Genetics, Cambridge for a L20001 Luna FL Automated Fluorescence Cell Counter.Lunar FL
This was the thank you the charity received from Carl Spickett, post-doctoral researcher working with Eamonn.:

“First and foremost a big thank-you to everyone for all your fundraising efforts and generous donations for Eamonn’s research. We had some discussion on how to make best use of your donation and decided to use the funds to purchase an automated ‘Luna FL’ cell counter for our work. The donation also covered the consumables for use with the equipment for at least one year.

I’ve included some pictures and thought I’d write a bit to describe how it is being used. As you can see it has really brightened up the cell culture room where our equipment is predominantly plain! The screen is extremely helpful for both demonstration and as a tangible way for us to discuss the findings as we get them in real time.

Our laboratory grown cells are counted on a daily basis to make sure we use the same number of cells for each of our experiments. We’ve found the new counter to be very fast and extremely accurate for doing this compared to counting by hand! In addition we are able to simultaneously check the health of our cell lines and measure their size accurately which is important for some of our experiments.

More specifically we extensively use kidney tumour cell lines to study disease progression. Since the cell counter is accurate over a range of cell types and shapes it is proving extremely accurate for use with these particular cells.

I hope this illustrates how this counter is not only extremely helpful for the specific applications of our work but also for the day-to-day tasks we need to do which are just as vital for our research.

Thanks again for all of your help on behalf of all of us using the equipment.”

Biorad Zoe 1Biorad Zoe 2Biorad Zoe 3


20th July 2015

Awarded £1,000 by the Community Directplus Donation Scheme run by the charity's bank

The donation will be used for a project to fund resources for the charity such as charity boxes, literature and meeting venues etc.

20th July 2015

£5,000 donation towards a Biorad Zoe fluorescent imager

Our £5,000 donation was spent by Eammon Maher, Head of the Department of Medical Genetics, Cambridge towards a Biorad Zoe fluorescent imager.

This was the thank you the charity received:

“My name is Carl Spickett and I’m a post-doctoral researcher working with Eamonn. Thank you very much for the kind donation that has enabled us to make the purchase of a brand new Biorad Zoe fluorescent imager which arrived in time for Christmas. We’re one of the first groups in the UK to have this particular model and it is already being used daily! The use of this microscope will help us use cells as a way to model disease, to help understand disease progression and ultimately develop new treatments. It really is an essential piece of equipment to us which had previously been lacking and dramatically improves the work we do with cells. I’ve attached some pictures for you. It perhaps doesn’t look like a conventional microscope but it is designed so that we don’t need a dedicated ‘dark room’ to use it. Much easier as it frees up space in the department and brings the microscope closer to the cells to avoid all sorts of potential problems. Furthermore, the screen on the microscope allows us to train other researchers and allows all of us to look at the cells simultaneously during assessment. On behalf of myself, Graeme Clarke, Hilda Mujcic and France Docquier (the principal users of the microscope) we wanted to say a big thank you for all of your fundraising.”

7th June 2015

Genetic Centres in UK and Ireland to receive patient information packs

Each listed Genetic Centre that manages VHL, HLRCC and BHD patients will receive information packs, containing information cards to pass on to patients.
Both newly diagnosed and existing patients and families will now be aware that there is support available. Each Genetic Centre should have the information pack from June 2015 onwards.
Find your nearest Genetic Centre.


1st June 2015

VHL Awareness Month May 2015 is a success

VHL UK/Ireland would like to thank everyone who took part in raising awareness during VHL Awareness Month – May 2015. The event saw VHL patients, families and supporters throughout the UK, Ireland and beyond get involved in various ways.
The month was not short of fantastic fundraisers including Amy Henson completed the MK Half Marathon, raising over £500 and Claire Hobson and her team of 27 climbed Ben Nevis, raising over a fantastic £10,000.

The charity’s Facebook description of VHL disease was shared over 500 times and reached over 18,000 people, with the Willem Defo video viewed over 6,000 times. The month also saw a significant rise if merchandise sales, as supporters took to raising awareness with clothing and pin badges.

To find out how you can carry on raising awareness, please visit the VHL Awareness Month page or our Fundraise page.

9th February 2015

We have gained registered charity in England & Wales 1160381

From the Charity Commission: “Registered Charity Number 1160381 VHL UK/IRELAND We are pleased to tell you that we are satisfied VHL UK/IRELAND is established for charitable purposes for the public benefit. It has therefore been entered onto the Register of Charities with the Registered Charity Number 1160381. The decision to register VHL UK/IRELAND was based on the information you and the trustees of this charity supplied during the application process.

3rd July 2014

Masquerade Party raises over £3,000 for VHL UK/Ireland!

A Masquerade Party raised over £3,000 for the charity on Friday 26th September 2014. The event saw over 230 guests attend to support both VHL UK/Ireland and Cancer Research, with over £6000 raised for both charities.

The event took place at Holiday Inn West Peterborough, Cambridgeshire and included a three course meal with drinks, a charityraffle, silent auction, photographer, chocolate fountain and candy floss vendors and more.vhl-uk-ireland-masquerade-party-news

VHL pin badges and t-shirts/vests were also sold on the night, raising an additional £150. VHL disease wine glass charms were also on sale to contribute to raising funds and awareness.

Graham Lovitt, Co-Chair of VHL UK/Ireland was overwhelmed by the support shown, saying “I would like to add my sincere thanks to Vixstar for making a fabulous evening to over 230 people. The sum of money raised for the charity completely exceeded my expectations as well as, perhaps more importantly, raising awareness of the rare VHL.

After the success of the 2014 Masquerade Party, event organisers Vixtstar hope to announce an event for 2015 shortly – find out more at

Read the VHL UK/Ireland blog post

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

Find out more →

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

Charity Trust No: CT54346