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Patient Advocacy: Core Topics
Rare Disease Patient Advocacy Group: “It's great that patients get a voice in the process, but the downside is that the overhead to provide that voice is substantial with no support.”

Realise Advocacy is working to build equitable and sustainable support for rare disease PAGs' involvement in drug development and access


Realise Advocacy supports patient involvement in drug development and access through:


  • Providing practical support to individual rare disease PAGs involved in drug development and HTA
  • Working with partners to drive a sustainable and equitable approach to supporting all rare disease PAGs
  • Supporting companies to maximise the impact of their engagement with rare disease PAGs

RareCare is co-led by Consilium Scientific and Realise Advocacy, with support from Coventry University and Human Data Sciences.


We are delighted to be collaborating with 8 Patient Advocacy Groups to ensure that the rare disease community are represented in this important research.


RareCare will help decision-makers to improve how the National Health Service (NHS) and other services support people living with rare diseases. Our research will generate practical outputs for individuals and families, carers, and service providers.


Find out more at www.rarecare.online
 
The Real Cost of Patient Involvement
Announcing the RareCare Project 2024-2026