Clinigen launches NaviGATE: an educational programme for rare disease patients and organisations

12 September 2023

Clinigen launches NaviGATE: an educational programme for rare disease
patients and organisations

            Accessing hard to reach medicines for people who need them most
  
Clinigen, the global pharmaceutical services company, today announces the launch of NaviGATE, a UK-based pilot educational programme for rare disease patient advocates and organisations.

The NaviGATE programme, co-created by Clinigen with the involvement of representatives of the rare community and patient advocacy groups, aims to provide navigational support and tools to better engage with healthcare providers, industry and regulatory bodies. The overall goal is to facilitate greater participation in rare disease research and development and to enable increased access to medicines for more patients.

The programme starts with a research questionnaire issued to the rare disease community which seeks to provide a deep understanding of the needs of this community and the gaps which they need addressed. Clinigen’s intention is to use the learnings from this questionnaire to inform the creation of an educational training programme for the rare community. The programme is designed to empower patients and patient advocates to support their communities to improve access to much-needed medicines.

Patient groups often serve as the only source of medical information for rare disease patients and their families but may lack the technical expertise to navigate the complex pharmaceutical landscape. Clinigen is a pioneer in the management of early access schemes and has many years’ experience in rare disease programmes. This track record puts the Company in a unique position to address a large unmet educational need for patient groups to advocate on behalf of themselves and others more effectively.

Jérôme Charton, Chief Executive Officer of Clinigen, said: “Clinigen has supported rare disease patients and patient advocate groups for over 35 years via our managed access programmes, and I am thrilled to see the launch of the NaviGATE educational programme. Providing patients, families and patient organisations with the tools to better engage with healthcare organisations represents a significant step forward in our commitment to the millions of people affected by rare diseases.”

Dr Lorna Pender, Global Patient Engagement Lead at Clinigen, said: “At Clinigen we are committed to incorporating the voice of the patient and to working in partnership with patient advocacy groups. Patients with rare diseases often struggle to understand how to cut through the complexity of this industry and make their voices heard among decision makers. This unique initiative will help us co-design a programme which should help this community use its voice in an informed way to influence industry, healthcare providers and regulators.

“The depth of expertise and experience here at Clinigen is unmatched, and, together with my colleagues, I am passionate about changing treatment access for the rare community, which is why I’m so excited about this initiative.”

Carole Scrafton, Director of Flutters & Strutters Patient Advocacy Organisation, said: “Education and training across multiple stakeholders, including patient advocacy groups, healthcare organisations, and healthcare professionals, is key to ensuring that people living with chronic illness and rare disease are able to navigate to receive the care that they need. I am so pleased to have this opportunity to be involved in co-creating and designing a training programme that meets the needs of the rare community.”

The first phase of the programme, which launches today, will see the distribution of a UK-wide patient group survey to identify what patient advocacy groups need from an educational programme. The results of this survey will be made available later in the year via publication of a white paper and, coupled with Clinigen’s expertise in early and managed access schemes, will inform the creation of an inclusive, accessible, multi-format training programme for the rare community.

For more information on the NaviGATE programme and how you can participate in the initial phase please visit navigateresearch.co.uk

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About Clinigen

Clinigen is a global, specialist pharmaceutical services company focused on providing ethical access to medicines. Its mission is to deliver the right medicine to the right patient at the right time. The Group supports pharmaceutical and biotech companies across the medical product lifecycle, from clinical through to commercial and operates from sites in North America, Europe, Africa and the Asia Pacific. Clinigen has more than 1,000 employees across five continents in 15 countries, and provides access in more than 120 countries every year.

For more information on Clinigen, please visit http://www.clinigengroup.com