Policy matters to you, now.
We know that rare and disabled communities are closely aligned; EURORDIS’ recent survey of over 10,000 people in Europe living with a rare disease found that 8 out of 10 considered themselves a person living with a disability. If you live in the UK with a rare disease, then any decisions made about your access to benefit support is based on what the government consider to be your needs as a disabled person, or someone living with a disability.
So what’s happening this week matters.
As part of our Living Well campaign, we are asking for:
- Rare Diseases to be considered a protected characteristic under teh Equality Act UK
- Any changes to benefits assessment systems to commit to consulting on the need for specific questions for the rare disease community
What do the proposed changes mean for our communities?
We don’t know yet, but we do know that change can cause fear and excitement, depending on your circumstances. As more details are released, we will keep up to date and want to hear from you too. Read the Governments recent report for the welfare reform here to find out more about the proposed changes. and contact us with your stories and thoughts.
If you have any questions or would like to speak to the team, you can email us on contact@metabolicsupport.org or call on 0800 652 3181 (10am-4pm, Monday, Wednesday, Thursday, Friday).
