Welcome
Building rare disease research around your voice
Join us in our global mission to gather your research priorities for the future
About Rare Disease Voice
Children and young people
Clinicians and Advocacy groups, including field workers
Children and young people
Click this link to find out more information for yourself or for someone you are supporting who is a child (above 8 years old) or a young adult.
Adults
Clinicians and Advocacy groups, including field workers
Children and young people
Click this link to find out more information for yourself or for someone you are supporting through easy read information for over 18 years.
Clinicians and Advocacy groups, including field workers
Clinicians and Advocacy groups, including field workers
Clinicians and Advocacy groups, including field workers
Click this link to find out more for the person, family or group that you are supporting
Do you Need children or adult focused information
Who We Are
James Lind Alliance
Our Steering Group and Partners
Our Steering Group and Partners
The James Lind Alliance (JLA) is a non-profit making initiative bringing patients, carers and clinicians together in JLA Priority Setting Partnerships (PSPs). JLA PSPs identify and prioritise unanswered questions that they agree are the most important, so that researchers and funders are aware of the issues that matter most to the people who need to use the research in their everyday lives.
Our Steering Group and Partners
Our Steering Group and Partners
Our Steering Group and Partners
Our team is made up of dedicated professionals who are passionate about making a difference in the lives of those we serve. From Steering group members to charity, industry and clinical partners, we aim to work together to ensure your voice is heard and the centre of Rare Disease Research.
Our promises to you
Our Steering Group and Partners
Our promises to you
We believe that your information is your information alone, and you have the responsibility to share it when you feel it's important. We will always protect your responses and only use them for the purpose of this project.
We will not share your information with anyone.
Our Protocol and terms of reference can be found here
Our Steering Group and Partners
