Patient Groups

Living with a rare disease can be isolating; for many patients, often the only relief and support they receive is through patient organisations. These groups provide a critical resource and a safety net for many, where people feel encouraged to explore ‘What is Possible?’ It is through these groups that patients realise that they are not alone, and often find the confidence and the knowledge to ask more of their doctors.

At Clinigen, our mission is to accelerate access to innovative medicines for patients in every corner of the globe. We want patients to know - and feel confident to ask - ‘What is Possible?’ – as we aim to arm Patient Advocacy Groups with the knowledge and access to support those living with these rare diseases.

With over 300 Clinigen Early Access Programs in operation, it is possible that through these patient network groups we can reach more people looking for new treatments.

Helping patients to understand what is possible

Early Access Programs (EAPs), offer ethical, compliant, and controlled mechanisms for patients to access investigational medicinal products outside of the clinical trial space and before they are officially marketed. These programs are designed for patients with seriously debilitating or life-threatening diseases and no other approved treatment options. But many patients feel in the dark about EAPs and don’t know, or feel confident to ask - ‘What is Possible?’

That’s where Patient Advocacy Groups (PAGs) come in. PAGs provide much-needed information about available EAPs to patients and their families. They act as a bridge between pharmaceutical companies, healthcare providers, and patients to improve access pathways, and contribute to better health outcomes. PAGs can also influence the development and implementation of EAPs, and by ensuring that the voices and needs of their community are considered, they contribute significantly.

Navigating early access

As pathfinders, we’re experts at navigating complexity and accelerating access to medicines to those that need them, and our world-class team works together with our pharma and biotech clients to impact lives through early access programs.

We want patients to know - and feel confident to ask - ‘What is Possible? and we appreciate the vital support that Patient Advocacy Groups provide in their journey. Early access is not a simple process, and it can be challenging for PAGs to understand and communicate the intricacies and rules of early access to patients and help them navigate the options. That is why we are creating NaviGATE, a new educational resource for PAGs and patients.

Created in collaboration with Flutters and Strutters patient organisation, RARE Revolution Magazine, Action for XP, and Michelle Conway of CRD Consulting Ltd, Clinigen’s NaviGATE program will provide educational resources that aim to help groups and individuals navigate this complex space and find out what’s possible.

Read about navigate here and join us.

If you represent a Patient Advocacy Group and want to talk to us about EAPs, please contact our Patient Advocacy Lead Lorna Pender.

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