A ground-breaking group of rare disease stakeholders have come together to form a Priority Setting Partnership (PSP) to find out what matters to patients, carers and clinicians in the field of rare inherited anaemias.
The group is calling on all stakeholders in the rare anaemias field to help them address an issue commonly found in the rare disease community. Patients with rare conditions, and the clinicians that work with them, often have far more questions than they have answers. Research is often scarce in the rare disease community and patients can face a lifelong, life limiting condition without any hope of a cure, and little prospect of any treatment. Patient groups report that when research is carried out, the issues addressed by researchers are not always in line with those that patients and clinicians feel are the most important.
The PSP on rare inherited anaemias has been set up with the goal of ensuring that all research seeks to address the questions that patients, their carers and the clinicians working with them, feel could have the biggest impact on their lives. To this end the Priority Setting Partnership has launched a survey asking for people to consider which questions they think are the most important for researchers to be asking.
Who can get involved?– The survey can be answered by anyone who has a rare inherited anaemia listed below;– is a carer or family member of someone with it;– is a health, or social care, professional caring for people with rare inherited anaemias; or– is part of an organisation representing and/ or supporting people with rare inherited anaemias.
By Rare Inherited Anaemias, we mean:– Diamond-Blackfan Anaemia– Congenital Dyserythropoietic Anaemia– Congenital Sideroblastic Anaemia– Red Cell Membrane Disorders– Red Cell Enzyme Disorders– Transfusion-Dependent Unexplained Inherited Anaemias
Genetic Alliance UKcontactus@geneticalliance.org.uk www.geneticalliance.org.uk Registered charity numbers: 1114195 and SC039299Registered company number: 05772999
We are calling on groups to disseminate the survey, and help us spread the word about the importance of Priority Setting Partnerships to rare disease patients.
For further details, please visit: