Become a Member of The Red Cell Patient Public Voice Group
Join Our Patient & Public Voice Group – Help Shape the Future of Care for Rare Inherited Anaemias
We’re inviting patients, carers, and family members affected by Rare Inherited Anaemias (RIA) to join our Patient & Public Voice Group (PPVG) – a friendly and welcoming group that helps shape the care and services we provide across our Red Cell Network.
Our network supports people living with Sickle Cell Disorder, Thalassaemia, and Rare Inherited Anaemias across London, South Central, and South West England. While we already have great input from those with Sickle Cell and Thalassaemia, we’re now especially looking for individuals and families with experience of Rare Inherited Anaemias to ensure their voices are heard and represented.
As a member of the PPVG, you’ll have the chance to:
- Share your experiences in a safe, respectful space
- Work alongside healthcare professionals to improve care
- Help shape services that better reflect the needs of RIA patients
Meetings are held online (via MS Teams) every few months and last around 60–90 minutes. Participation is completely voluntary, and you’ll receive a £25 e-voucher for each meeting you attend.
Your involvement won’t affect your care in any way, and everything discussed remains confidential.
Interested? Just fill out this short form to let us know:
https://forms.office.com/e/YVSPdMBMBF
Deadline: 31 August 2025
Please note: spaces are limited, so submitting the form doesn’t guarantee a spot—but we’d love to hear from you!
Whether you’re a patient, parent, sibling, or carer—your voice matters. Help us make a difference.
