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Patient & Caregiver Advisory Council

P4A hand selected disease-specific P&C Councils help you learn from patients and caregivers through launch

Despite the obvious unmet need, there are many challenges in developing therapies for rare diseases

Some of the most significant challenges include:

Finding and correctly
diagnosing patients

Understand the full impact of
suffering with a rare disease

Recruitment and
retention in clinical trials

Effectively demonstrating
relevant patient benefits

The P&C Council

Provides vital guidance throughout a product lifecycle
as your asset and the disease environment evolves

Understand the day to day impact of suffering with a rare disease to identify genuinely valuable solutions for patients

Shape and co-create clinical trial design to effectively demonstrate value and optimize patient recruitment / retention minimizing trial delays

Drive patient empowerment to increase disease awareness, timely diagnosis and ensure patients achieve access to the optimal therapy / intervention

  • Understand the day to day impact of suffering with a rare disease to identify genuinely valuable solutions for patients
  • Shape and co-create clinical trial design to effectively demonstrate value and optimize patient recruitment / retention minimizing trial delays
  • Drive patient empowerment to increase disease awareness, timely diagnosis and ensure patients achieve access to the optimal therapy / intervention
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The foundation of our approach is not
just about patient engagement, P4A
want to drive patient empowerment

An empowerment strategy helps patients

  • Become health literate, actively improving the quality of their life
  • Co-manage their disease with healthcare practitioners
  • Ensure they achieve the optimal therapy or healthcare intervention
  • Champion disease awareness and advocate for best standard of care for others

We develop specific Council in line with your unique situation & requirements

Timelines for Council set-up depend upon the disease and your needs. An ultra-rare disease with little to no disease awareness and advocacy network has the longest set-up time

Typically, a disease-specific Council comprises approximately 10-15 patients and/or caregivers

A Council is global, pan-country or local; local language is preferred for most Council members, therefore group meetings or online advisory boards need simultaneous translation
Most of our clients opt for blinded Councils to align with internal compliance requirements
Most frequently the Council is commissioned on an annual basis with an estimated number of interactions. Our interaction model uses in-depth discussions, advisory boards, online surveys & written feedback

Council members are paid an honoraria fee

Choice of Council members depends upon the disease (e.g., we exclusively include caregivers in rare diseases impacting children or those mentally impaired to create insights) and your unique situation

Want to find out more about P4A’s Patient & Caregiver Advisory Council service and the ways it can help you launch and optimize your product?
Contact us

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We are award winning global experts in access for orphan drugs and Cell and Gene Therapies.

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