We would like to establish a pool of primary sclerosing cholangitis (PSC) patients who are European Medicines Agency (EMA) Patient Experts or who are interested in becoming EMA Patient Experts for PSC.
Marleen Kaatee – PSC Patients Europe (PSC patient)
Larissa de Lannoy – PSC Patients Europe (PSC patient)
Martine Walmsley – PSC Support (PSC patient)
The purpose of creating a PSC Patient Expert Pool is to create a strong PSC patient voice for Europe advocating for PSC patients in EMA-related research and medicine development. While there is no medical treatment for PSC, research trials are underway with more in the pipeline. As a patient community we must be prepared and ready when the EMA requests patient input. While many EMA activities require absolute confidentiality, occasionally there are opportunities for collaboration and collective input to prepare a response.
If you are interested please get in touch. The EMA provides training on aspects of medicine research and development, and on the processes within the EMA. Ideally we are looking for people with a strong understanding of the unmet needs of PSC patients.
Get in touch
Please email Marleen Kaatee at info@PSCPatientsEurope.org.
For more information see EMA website
A PSC Patients Europe initiative!