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RareChat | Experiences of approval and reimbursement

9th March, 2022 at 2:00 pm - 3:30 pm GMT

Next RareChat announced: Experiences of approval and reimbursement!

Securing approval and reimbursement for new rare disease treatment is often one of the most challenging and frustrating parts of treatment development. It is also part of the process where many patient organisations are asked to provide their expert voice, opinion, and data to support the assessment process. With a potential therapy tantalisingly close, this can be a daunting prospect for many patient advocates, and the pressure on their shoulders can feel overwhelming.

In this RareChat we would like to explore your experience of engaging in the regulatory and reimbursement processes for new rare disease therapies.

Join us to discuss:

  • Your involvement – how did it come about and what did you do?
  • How you and your organisation prepared to engage with regulators or reimbursement bodies? Was there useful support and guidance?
  • What was the impact of your contribution? Did you feel it affected the outcome?
  • What was most challenging about the process?
  • How did the community react to the involvement of your organisation and the outcome of the assessment?
  • How can these pathways be improved?

This RareChat will be a great space to share ideas and get inspiration for the future from your fellow patient group leaders!


9th March, 2022
2:00 pm - 3:30 pm GMT
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