Expertise / Rare Disease

A focus on patients with rare diseases

With broad expertise in bringing therapies to the people who need them; our rare disease capabilities cover the full lifecycle. From improving diagnostic and treatment pathways, to impactful scientific and value communications through to innovative patient support and outcomes monitoring.

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We know the ins and outs of the complex rare disease market

OPEN Health is highly invested in the delivery of positive outcomes in rare disease. We have extensive experience across our practices having worked with many clients within the area of orphan and ultra-orphan medicine.

Our broad capabilities help us to recognise that every scenario is unique and we therefore apply bespoke, cohesive solutions to ensure optimal outcomes are achieved for our clients and the patients they serve. Over 300 of our 450 staff have direct rare disease experience, and as a group we have partnered with over 20 rare disease-focused companies in the last three years.

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OPEN Health invest to support outcomes in rare disease

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Gavin Jones Profile.

The face of rare disease expertise at OPEN Health

To optimise our capability and truly meet the needs of our customers we have invested in the deployment of a Director of Rare Disease to advise and work across all of our practices.

Gavin Jones has over 20 years of biopharmaceutical industry experience across numerous roles involved in market access, therapy launch and patient centric services. For 15 years he has development a specialist interest in rare and ultra-rare disease supporting many orphan therapies as they have been commercialised within Europe. He is passionate about supporting optimal patient outcomes through effective therapy awareness; diagnostic and treatment pathway improvement and patient activation.


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A proud partner of Rare Revolution magazine

We always strive for a ‘patient first’ approach in rare disease and are therefore honoured to be partnered with Rare Revolution magazine.  We value the opportunity to share our current thinking on various important topics in rare disease and contribute to their mission of amplifying the patient voice in rare disease.

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Read the articles

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Our thinking in haemophilia

It’s a dynamic time in in this therapy area with significantly more treatments becoming available and offering the potential of improved patient outcomes and convenience. We discuss how to deliver exceptional communications at a time of revolution following decades of gradual evolution.

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Our thinking in rare oncology

At a time of increased innovation in diagnostics and the growth of more personalised medicine; rare cancers could in fact be seen as becoming more common. We discuss how communications can be effectively delivered to support better outcomes for patients living with rare and less common cancers.

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Our thinking in gene therapy

It is a fascinating time; we are moving from a trickle of gene and advanced cell therapies to a potential torrent of new treatments coming to market. This is going to create unprecedented challenges and opportunities and world class communications will be required to maximise their potential.

Rare disease launch - key considerations

The challenge of diagnosis
Influence of PAGS & public perception
HCP endorsement across patient pathway
Often limited data platform
Expedited approval timelines
Pricing & reimbursement
Patient pathway ill-defined
Adherence to treatment & follow up

Get in touch

For more information on how we can support your journey in rare disease, get in touch.

Gavin Jones

Director of rare disease, OPEN Health