We Need Your Help - Contact Your MP
The Brittle Bone Society need your help in contacting MPs across the UK to raise awareness of OI and other rare, genetic and undiagnosed conditions and to encourage them to join a new All Party Parliamentary group on rare, genetic and undiagnosed conditions.
What is an All Party Parliamentary Group (APPG)?
All Party Parliamentary Groups (APPGs) are informal, cross-party, interest groups of MPs and Peers interested in a particular issue.
APPGs do not have any power to make laws and are not funded by Parliament. There are a great number of APPGs, covering many and diverse fields such as health, education, transport, defence, finance, the media, and sports.
What will an APPG on rare, genetic and undiagnosed conditions do?
Increase awareness of rare, genetic and undiagnosed conditions in parliament.
Help to ensure that patients and families affected by these conditions have access to appropriate care and support.
Connect MPs (and Lords) with the issues that matter to their constituents
How can I help?
The Brittle Bone Society is calling for support to help set up an All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions.
We ask you to use your influence and please contact your local MP (you can find out who your local MP is here).
Then simply send a letter encouraging them to join – it will only take a few minutes to adapt the letter we have drafted for you. Find it here.
The more MPs that are actively engaged in the group, the more opportunity we have to raise awareness, influence change, and work together to improve the lives of individuals affected by rare and genetic conditions like Osteogenesis Imperfecta.
The more letters we can send from the Brittle Bone Society membership - the more awareness we can raise!
Please see instructions below on how to get in touch with your local politician.
Please remember, when adapting the template letters delete the instruction e.g. “[Insert name of MP]” and remember to change the red font colour back to black.
We would be interested in hearing if you get a response from your politician as this helps us to identify who has an interest in rare diseases which helps our campaign work.