Petition · past parliament · Department of Health and Social Care
Commit to a 'Childhood Rare Disease Strategy' - address health inequality
Closed
354 signatures
What the petition asks
Commit to a 'Childhood Rare Disease Strategy' to improve how we detect, treat and care for children with rare diseases including their mental health and wellbeing. We ask for equity in funding for research into non-cancerous rare diseases to improve health inequalities, education and outcomes.
Our daughter Millie was one in a million. In Millie’s case it is believed she had a rare underlying auto immune condition that has no name and was mis-diagnosed as a mild condition in her younger years.
We want focus and commitment on research for non-cancerous rare disease. Too many of our children are dying due to the inequity in research, education and health equalities.
Five children die every week from a rare disease. Often the child is misdiagnosed or undiagnosed. This needs to change.
We want focus and commitment on research for non-cancerous rare disease. Too many of our children are dying due to the inequity in research, education and health equalities.
Five children die every week from a rare disease. Often the child is misdiagnosed or undiagnosed. This needs to change.
Timeline
| 26 Apr 2023 | Petition opened for signatures |
| 26 Oct 2023 | Closed to new signatures |
Key facts
Signatures
354
Status
Closed
Department
Department of Health and Social Care
Opened
26 Apr 2023
Closed
26 Oct 2023
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Source: the official petition page. Last checked 15 Jul 2026.