About us / Rare Disease

A patient-first commitment in rare disease

We have broad expertise in bringing therapies to the patients who need them. Our rare disease capabilities cover the full life cycle: they inform diagnostic and treatment pathways, they allow us to produce high-impact scientific value communications, and they improve patient support and outcomes monitoring.


An outcome-led commitment in RARE

OPEN Health is highly invested in the delivery of positive outcomes in rare disease. Having worked with many clients within the area of orphan and ultra-orphan medicine, we have the experience to recognize that every scenario is unique. With our extensive experience across practices, we are able to craft bespoke, cohesive solutions to achieve optimal outcomes for our clients and the patients they serve.

Gavin Jones
Gavin Jones

Global Advisor, Rare Disease

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Leading our commitment in RARE

To optimize our capabilities and truly meet or exceed customers’ needs, we have invested in a Global Advisory Rare Diseases to work across all our practices.

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


Rare thoughts & outcomes

Improving life transitions in people living with rare

Innovation in medicines and better supportive care mean that more patients are living longer with rare disease. Great news, but it is creating new challenges for these patients in transitioning through life.

People may be left isolated, leading them to disengage with health systems and not adhere to treatment. It also creates gaps in the understanding of the long-term benefit and value of new innovations, resulting in delayed or limited access.

Pharma can play a key role in supporting better understanding and implementation of transition support by employing a multidisciplinary approach to solving some of the key challenges.

Our intention is to reflect this Q1 theme on that cross-functional collaboration, and we believe there will be value for many different roles in participating.

OPEN Health invested in outcomes with Gene Therapies

It is a time of high hope and expectation within the rare disease and oncology communities, given the increasing numbers of gene therapies coming to market. OPEN Health has built significant experience in this space, but we come with the humility that we are all learning together in these unprecedented times.

We have created a solutions incubator that brings together our capabilities and experience to deliver for our clients and the patients they are striving to serve. This includes the recent publication of a white paper:


White paper

Succeeding with Star Wars medicine: Translating the science and value of gene therapy to your key stakeholders

White paper

Watch Gavin discuss the key themes with two leaders from the patient community and industry


A proud partner of Rare Revolution magazine

We always strive for a ‘patient first’ approach in rare disease, and we are therefore honored to be partnered with Rare Revolution magazine.

We value the opportunity to share our thoughts on important topics in rare disease and contribute to the magazine’s mission of amplifying the patient voice in rare disease.


Read the articles


Rare revolution rare blood edition 2x
Our thinking in rare blood

After many years of creeping evolution, we now are in the midst of rapid evolution in the management of hemophilia and other rare blood disorders. We look at how Pharma supports more personalized approaches to managing these conditions in a way that enables patients to live more freely with their condition while feeling protected from adverse events.


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Our thinking in rare oncology

At a time of increased innovation in diagnostics and the growth of more personalized medicine, rare cancers may seem to be more common. We discuss how communications can be effectively delivered to support better outcomes for patients living with rare and less common cancers.


RARE Revolution - RARE Gene Therapy Edition
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 revolution winter 2020
Patients as Partners

Patient-centricity continues to grow in priority within Bio-Pharma’s clinical and commercial strategies. Given the high stakes and continued unmet need, rare disease communities should help lead effective patient partnerships that remain compliant and sustainable. We share our ‘patient first’ thinking here.


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Professionals and Places

In these challenging times, the rare disease community must draw closer than ever and harness efforts to improve outcomes for patients and families living with a rare disease. We look at how to harness this collective power and create connectivity between key stakeholders to deliver better outcomes for patients.


Rare Revolution magazine cover.
Patient Transition

Given improvements in disease management, children and adolescents with rare diseases are living longer. Underneath this positivity is the challenge of effectively supporting these patients into adulthood. We will consider the challenges in transition and how Pharma can support patients as they transition from pediatric into adult services.



Get in touch

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

Gavin Jones

Global Advisor, Rare Disease

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