91 - SYNGAP1 Has a Patient Voice Publication (PVP)

What is a PVP and why do we want one?

Patients and families long to tell their health stories and to have their voices heard. Patient Voice Publications (PVPs) tell the patient story, highlighting for the pharmaceutical industry (pharma) the challenges they face and the everyday support they need. PVPs bring the patient voice to industry; they are stories told by patients for pharma focusing on what matters. They also highlight the profound impact a SYNGAP1 diagnosis  has on families. 

Bringing the patient experience to the forefront leads to a triple win – better outcomes for patients, for pharma, and for society. 

How did we get a PVP?

The Cambridge (UK) Rare Disease Network introduced SRF to Prime Global, a medical communications company that has created a “new way for patients to speak to pharma and for pharma to meaningfully listen to patients in a collaboration that … benefits society.”

The result was this beautiful poster that speaks candidly about living with SYNGAP1.

In addition,  SRF’s own member/Syngap mom Jess explains the value of amplifying the patient voice in this short video.

How can PVPs be used?

The Prime Global website says it well:

The communications gap between patients and pharma is wide. How can we as patients connect with pharma and help to inform the support they provide to deliver meaningful change in our everyday lives. How can we make our voices heard?

PVPs give patients the opportunity to tell their story and have their voices heard by those who can make meaningful change. … Patient Voice Publications pave the way to deliver patient-informed care and support.

SRF thanks all involved for creating such a beautiful and informative publication!