Introduction

At Clinigen, we are committed to getting the right medicine to the right patient at the right time. It is therefore natural that part of our work focuses on engagement with patient advocacy groups, listening to their needs, learning from them, and engaging to educate and empower on the topic of access to medicines, specifically those that are hard to obtain, but which address an unmet medical need.


This can be an area that is not given much focus, or has low awareness amongst the many priorities of a busy advocacy organisation, but nonetheless it is an important part of the armoury required to face the access challenges that exist in today’s healthcare systems.


Key facts

Clinigen proudly supports a number of patient groups and also organisations that champion safe online pharmacy. See below for a list of organisations that we currently support:

Global Genes
EURORDIS
Genetic Disorders UK
CheckOrphan
European Alliance for Access to Safe Medicines (EAASM)
Alliance for Safe Online Pharmacy (ASOP EU)


How we can help

Every year, thousands of patients and care givers across the globe face the dire situation of discovering that the medicine they need is unavailable to them. It could be that it is still in development, a discontinued line, or simply unavailable in the country they reside in.

In these difficult times, patient advocacy groups can play a critical role as a trusted resource for their patients, providing timely and accurate information about the process for accessing unlicensed medicines, and explaining the roles of all the different stakeholders involved. 

If you are a patient group representative and would like to understand more about ethical, compliant routes that a physician can utilise to access an unlicensed medicine on behalf of his/her patient, and explore what your role in that might be, please get in touch with us on patientadvocacy@clinigengroup.com. We would love to hear from you!