Commit to a 'Childhood Rare Disease Strategy' - address health inequality

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Commit to a 'Childhood Rare Disease Strategy' - address health inequality

Petition Details

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.

Additional Information

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.

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