Belzutifan (Welireg®). HTA ID: 25020 | National Centre for Pharmacoeconomics

It says:

“The NCPE recommends that belzutifan (Welireg®) not be considered for reimbursement unless cost-effectiveness can be improved relative to existing treatments*.

* Next steps: The NCPE Assessment Report and recommendation, and Patient Organisation submission will be considered by the HSE when making their decision on reimbursement, while also having regard to the criteria specified in the Health (Pricing and Supply of Medical Goods) Act 2013. 

There is a useful further explanation here:

Belzutifan-25020-Plain-English-Summary.pdf

The VHL UK/Ireland Charity is disappointed by the NCPE recommendation not to reimburse belzutifan (Welireg®) at this stage. However, this is not the final decision.

The recommendation concerns cost-effectiveness, and the next step is for the HSE and the manufacturer to enter into pricing discussions to determine whether a more affordable agreement can be reached. We are grateful that our patient submission will be considered in this process, and to the patients who made some very powerful contributions.

For people living with VHL, belzutifan offers hope as an important new treatment option. Patients and families remain hopeful that an agreement can be reached to allow access to this medicine in Ireland.

The research aims to understand how finding out about a VHL genetic diagnosis during childhood or teenage years may have affected people’s thoughts, feelings, and social experiences later in life.

The study is looking for adults (aged 18 or older) who were diagnosed with VHL through genetic testing as children—before they showed any symptoms.

The study will take place remotely, and all information you share will be kept private and handled according to Data Protection laws.

Study on the impact of a predictive genetic diagnosis in childhood on psychosocial experiences of adults with von Hippel-Lindau Syndrome (VHL).

Aim of Study:

To explore the psychological and social impact that receiving a genetic diagnosis during childhood or adolescence may have had on the later life experiences of individuals with VHL.

Potential study benefits:

To gain greater understanding of the lived experiences of these individuals as this topic has not previously been investigated in the English language.  Research in this field aims to inform patient-centred clinical service improvements.

Am I eligible to take part?

You can take part in this study if you are an adult over the age of 18 who received a genetic diagnosis of VHL in childhood before any symptoms of the condition were present or diagnosed. You must be able to speak and understand English to consent to take part in this research.

What do I have to do to take part?

If you are interested in taking part in this study, please contact the researcher directly, contact details below.  You will be provided the opportunity to discuss the study with the researcher and ask any questions.  If you subsequently decide to take part, you will be required to sign a consent form which will be securely stored at Cardiff University. 

The study involves an interview during which you will be asked questions about how VHL may have impacted your life experiences since your genetic diagnosis.

This will be conducted online using the MS Teams platform (or on request by telephone) and will last around 45-60 minutes. You will be able to decide when the most convenient time is, for the interview to take place.

All interviews will be audio-recorded either via MS Team or using a dictaphone for telephone interviews (with phone on loudspeaker) and stored securely on the Cardiff University server. Following the interview, you will have the opportunity to share any additional thoughts and experiences via a post interview questionnaire or ask any additional questions in relation to this project. 

Confidentiality:

All of your personal information and data will be securely stored on a password-protected computer.  All information will be anonymised, and pseudonyms (false names) will be used.

What will happen to my data?

The results of this study will be published as a student dissertation for Cardiff University.  The results may also be published in relevant peer-reviewed scientific journals.  They will also be shared with the VHL-UK-Ireland support group and participants of the study should they be interested in receiving them.  None of your personal information will be shared in any publications.

Contact details for registration: If you are interested in taking part in this research, please contact the researcher by email:

Researcher: Eva Farrell: farrellel@Cardiff.ac.uk

We are currently inviting applications for two exciting opportunities to join our charity and play a key role in shaping our future. These voluntary roles offer a chance to contribute your skills, experience, and passion to a community-driven organisation making a real impact.

Role: Chair of Trustees – VHL UK/Ireland

Location: Remote (UK/Ireland-based)
Time Commitment: Approx. 1–2 days per month (including quarterly meetings)
Term: 3 years (renewable)
Voluntary Role (Unpaid)

The Role

We are seeking a new Chair of Trustees to lead our Board and help shape the future of the charity. This is a pivotal role at a time of growth and renewed strategic focus.

The Chair will work closely with the Board of Trustees and the wider volunteer team to ensure the charity is well-governed, impactful, and sustainable.

Key Responsibilities

• Leadership & Governance
  • Provide inclusive leadership to the Board of Trustees.
  • Ensure the charity complies with its governing document, charity law, and other relevant legislation.
  • Facilitate effective decision-making and strategic planning.
• Board Management
  • Chair quarterly trustee meetings and the Annual General Meeting (AGM).
  • Support and appraise fellow trustees, encouraging active participation and development.
  • Ensure the Board operates effectively and reflects the diversity of the community we serve.
• Strategic Oversight
  • Guide the development and implementation of the charity’s strategic plan.
  • Act as a sounding board for the Secretary and other officers on operational matters.
• Ambassadorship
  • Represent the charity externally, including with partners, funders, and the VHL Alliance.
  • Champion the charity’s mission and values in public forums and media opportunities.
• Collaboration
  • Work closely with the Secretary, Treasurer, and other Co-Chairs to ensure smooth day-to-day operations.
  • Support fundraising and awareness campaigns, including VHL Awareness Month and the annual Charity Ball.
  • Engage with clinicians regarding potential grant awards and developments.

Person Specification

We are looking for someone who:

• Has experience of charity governance or leadership (not necessarily as a Chair).
• Is a confident communicator and facilitator.
• Demonstrates empathy and understanding of the challenges faced by people living with rare conditions.
• Is committed to equity, inclusion, and collaborative working.
• Ideally has lived experience of VHL or a related condition (not essential).

How to Apply

To express interest or request an informal conversation, please email trustees@vhl-uk-ireland.org with a short statement outlining your interest and relevant experience.

Secretary of Trustees

Location: Remote (UK/Ireland-based)
Time Commitment: Approx. 1–2 days per month
Term: 3 years (renewable)
Voluntary Role (Unpaid)

The Role

We are seeking a new Secretary of Trustees to support the governance and administration of the charity. This is a vital role that ensures the smooth running of trustee meetings and compliance with legal and regulatory requirements.

The Secretary will work closely with the Chair, Treasurer, and other trustees to maintain accurate records and facilitate effective communication.

Key Responsibilities

• Governance & Compliance
  • Ensure the charity complies with statutory and regulatory requirements, including filing with the Charity Commission.
  • Maintain up-to-date records of trustee appointments and declarations of interest.
• Meeting Administration
  • Organise and schedule trustee meetings and the Annual General Meeting (AGM).
  • Prepare and circulate agendas, minutes, and supporting documents.
  • Record accurate minutes and actions from meetings.
• Communication & Coordination
  • Act as the main point of contact for trustee communications.
  • Support the coordination of trustee activities and follow-up on agreed actions.
  • Liaise with external stakeholders as needed (e.g. Charity Commission, VHL Alliance).
• Documentation & Record-Keeping
  • Maintain the charity’s governing documents and policies.
  • Ensure secure and accessible storage of key documents and records.

Person Specification

We are looking for someone who:

• Has strong organisational and administrative skills.
• Is detail-oriented and reliable.
• Communicates clearly and professionally.
• Has experience of minute-taking and document management (not necessarily in a charity setting).
• Is committed to the values and mission of VHL UK/Ireland.
• Ideally has lived experience of VHL or a related condition (not essential).

How to Apply

To express interest or request an informal conversation, please email trustees@vhl-uk-ireland.org with a short statement outlining your interest and relevant experience.

Throughout the month, individuals and families came together to share stories, spread knowledge and raise awareness. From heartfelt personal stories to informative posts about VHL, the online community truly showed its strength and compassion.

This surge in engagement not only increased understanding of VHL but also helped connect more people to vital resources and support networks. It’s a testament to how collective efforts can amplify awareness and foster hope for those affected by this rare genetic disorder.

As we reflect on this successful Awareness Month, let’s continue to keep the conversation going. Every share, comment and connection brings us closer to a future where VHL is better understood, diagnosed early and managed effectively.

Thank you to everyone who participated and helped make May 2025 a milestone month for VHL awareness. Together, we’re making a difference — one story at a time! 💙

We have had several requests for how to handle legacy donations. Please email us to discuss further. The UK Cancer Charity Macmillan has a Free Will Writing Service and Guide.

Donating in Memory or Leaving a Gift in Your Will

We are often contacted by family members who wish to honour a loved one’s memory or support VHL UK/Ireland through a gift in their will. If you would like to make a donation in memory, such as in place of flowers at a funeral, or leave a legacy to help us continue our work, you can do so via our [GoFundMe] or [PayPal] pages above.

We are deeply grateful for these meaningful contributions, which help us support individuals and families affected by VHL.
Gift Aid, which enables UK taxpayers to enhance their donation value to charities by 25%, is not applicable to legacy gifts.
However, on money in small cash amounts (less than £30) collected at a funeral and paid as a sum into the Charity’s bank account, Gift Aid can be collected, adding 25%

All VHL warriors family and friends who took part 🩵