Volunteer to join our Panels

There are approximately 24,000 people currently living with myeloma in the UK. Myeloma UK is the only UK charity focused on myeloma and its related conditions.

Every day we work with people affected by myeloma, healthcare professionals, researchers, policy makers and others who want to be part of driving change, so that people can live longer and better lives with myeloma, and ultimately, to find a cure.

Together, we’re making amazing progress in the research and treatment of myeloma – but we need to go further, faster.

People affected by myeloma are at the heart of everything we do. Share your voice by volunteering to join our panels.

We’re currently looking for people to join our Patient Information Panel (PIP), Advocacy Partner Panel (APP) and Patient and Carer Research Panel (PCRP).

Patient Information Panel (PIP)

Myeloma UK produces information resources for people affected by myeloma and related conditions, their families and friends. We review our publications regularly and create new ones where needed.

When it’s time to review or develop our information, members of this panel will read it and give feedback, helping to make sure it’s clear and easy to understand.

The Patient Information Panel is a group of up to 80 members who give feedback on our information resources. We ask for feedback by email, usually through one-off questions and surveys.

Why join the Patient Information Panel?

  • Make a difference to the information provided for people affected by myeloma or related conditions
  • Have your say about how information is developed

The overall time commitment is less than one day per month. Giving feedback is always optional and members can choose whether to respond to these requests. Sometimes we will ask a small number of members for a more in-depth publication review, taking up to two hours, and if so, we will ask in advance.

Advocacy Partner Panel (APP)

Myeloma UK works with decision makers including politicians, senior figures in the NHS, drug approval bodies and industry. We need to hear what people affected by myeloma or related conditions want, so that we use our influence with decision makers effectively. Advocacy work is the term we use to describe this influencing process.

The Advocacy Partner Panel (APP) is a collaborative group of around 12 appointed patients, carers, family and friends who help with our advocacy work.

Why join the Advocacy Partner Panel?

  • Share your lived experience to help others
  • Represent the diverse myeloma community
  • Make a difference to the decisions made by external organisations that affect people with myeloma, e.g. new treatment appraisals

Meetings currently take place twice per year and the overall time commitment is less than one day per month.

Patient & Carer Research Panel (PCRP)

Myeloma UK’s research team decide which research studies to fund and how these are designed. We want to use our limited resources wisely and ensure our research is the best it can be. We need to hear from people affected by myeloma or related conditions to reflect the research priorities of the people who we serve.

The Patient and Carer Research Panel is a group of around 70 people who volunteer to help us with the research we fund and support.

Why join the Patient and Carer Research Panel?

  • Influence the research decisions made by Myeloma UK
  • Share your lived experience to help others, either through Myeloma UK’s research activities or through external organisations

The overall time commitment is less than one day per month and communication is by email.

We make it possible to live longer and better lives with myeloma. Through research and treatments, we find new ways to a cure. Together, we support. So no-one faces myeloma alone.

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