Going forward there are likely to be significant fiscal pressures on the NHS. We want a future where families affected by rare diseases won’t be disproportionately impacted by any cost reduction measures and potentially lose access to innovative healthcare. We think there is a beacon of hope and opportunity in the UK Rare Diseases Framework and we are inviting a diverse group of stakeholders together to discuss the future and see if there is alignment in the way we see the future, our thinking and how to coordinate action.

Expect attendees from patient organisations, pharmaceutical organisations and the rare disease community.

Expect to discuss the UK Rare Diseases Framework.

Expect to leave with a plan for what we want the future to look like.