Market Access

In advance of Rare Disease Day 2026, GHMC convened its International Advisory Panel* for a global discussion on the realities of working in rare diseases. With experience spanning dozens of rare conditions across multiple markets, our teams reflected on this year’s theme, “More Than You Can Imagine.”

There are more people with rare diseases than you can imagine. Despite each individual rare disease having a small population, once combined, 1 in every 17 people is thought to have a rare disease. This adds up to millions of people.

Rare diseases also demand more than you can imagine: more empathy, more flexibility, more patience, and more strategic precision. They also offer more than you might expect—deeper partnerships and powerful patient stories that give us the opportunity to create meaningful change for communities that are too often overlooked.

From a global perspective, several themes related to biopharma industry communications seem universal: pricing, regulatory approval, funding, advocacy and other aspects. However, in rare disease these themes are also more nuanced than you can imagine, especially when working across markets and region

1. Emotional sensitivity is not optional

Rare disease patients and families often live with prolonged uncertainty—delayed diagnoses, limited treatment options and difficult access pathways. Communication about clinical trials, particularly ineligibility, requires exceptional care because every interaction has the potential to carry significant weight.

2. Marginalization and stigma are real

In many countries, rare disease communities have limited advocacy infrastructure. Stigma and social isolation can compound medical challenges. Communications must be culturally sensitive, locally informed and rooted in respect.

3. Access pathways are rarely straightforward

Reimbursement and regulatory environments vary dramatically. From alternative funding mechanisms in Singapore to evolving health system integration in Argentina and lengthy processes across parts of Latin America, rare disease innovation often moves through non-traditional and highly scrutinized pathways. Strategy must reflect this complexity.

4. With small patient populations, every story is consequential

Some conditions may affect only a handful of individuals in a given country. When numbers are this small, communication becomes both more personal and more consequential. Ethical storytelling and privacy considerations are paramount.

5. Foundational education is often the first step

Rare diseases frequently lack baseline understanding among policymakers, payers, clinicians and the public. Before driving awareness or action, communicators must often establish the fundamentals—what the disease is, how it presents and why it matters.

6. Pricing and public debate require thoughtful navigation

Therapies—especially those involving children—can attract intense media scrutiny. Public discourse around pricing and reimbursement can become emotional and politicized. Clear, balanced communication grounded in patient need and long-term value is essential.

7. “Rare disease” is not one category

There are thousands of rare diseases, and only a fraction have approved treatments. Many patients lack representation or advocacy support, leading to varied levels of engagement across disease types. Each disease area demands a tailored approach rather than a one-size-fits-all strategy.

8. Depth matters more than breadth

Traditional awareness metrics don’t always apply. Broad reach may be unrealistic and unnecessary. Success in rare disease communications is often measured by depth of engagement, strength of relationship, and trust built within small but highly connected communities.

9. Patients are partners, not spokespeople

Listening to patients’ diagnostic journeys and supporting them in telling their stories—on their own terms—builds authentic advocacy. Empowerment strengthens not only communications outcomes, but also community resilience.

10. Community-building drives impact

Grassroots campaigns have influenced policy decisions and accelerated inclusion of therapies in national programs. Collective advocacy amplifies voices. Visual storytelling and, when appropriate, public figures can help reduce isolation and broaden understanding.

Rare disease work requires more imagination, more patience and more responsibility than many other therapeutic areas. But it also offers the chance to make a disproportionate difference.

Need help interpreting global complexity for your brand? If you’re navigating a rare disease innovation and need experienced, globally informed communications support, we’d welcome the conversation.

* The GHMC International Advisory Panel brings together a curated network of senior healthcare communications experts from across more than 20 key global markets with more than 200 years of combined experience. The panel serves as a real-time sounding board for the most important trends, challenges and developments shaping the international healthcare landscape.

Designed to move beyond theory, the Advisory Panel translates global insight into practical guidance, helping organizations anticipate change, stress-test strategies and stay ahead in a rapidly evolving health ecosystem.  We stay connected to share insights and perspectives between different markets, but we all share the same desire to connect medical advances with those who need them.

Infinity Communications is a women-led agency based in Geneva, providing specialist expertise for commercial healthcare and global health sectors

Strategic collaboration further strengthens GHMC’s footprint and capabilities in key European market for biopharma and global health organizations

NEW YORK and GENEVA, February 17, 2025– Global Health Marketing & Communications (GHMC), the largest and most robust partnership of independent healthcare agencies worldwide, today announced the addition of Infinity Communications, a Swiss-based agency to its international network. This addition strengthens GHMC’s offerings in the European region and expands the capabilities of the network in this important market.

Established in 2019, Infinity Communications is a leading health communications agency operating in an influential market. Strategically placed at the intersection of commercial and public health, their multi-lingual, women-led team works with pharmaceutical, biotech, medtech, and non-profit organizations to create research-driven, strategic communications for a healthier world.

“Infinity Communications is a leader in the global healthcare communications space, delivering hugely impactful programming in Switzerland and around the world. We are thrilled to welcome Sarbjit and her team to the GHMC family, further enhancing our ability to serve our Global and European clients,” said GHMC President and Chief Growth Officer of Spectrum Science, Tim Goddard.

Switzerland is the global or regional headquarters to many of the world’s leading pharmaceutical and biotechnology companies, and a powerhouse of scientific and technological innovation. It is also home to the World Health Organization, and a number of other internationally recognized healthcare NGOs.

For Infinity, joining the GHMC network opens new opportunities. “It is an honor to represent the GHMC Network in Switzerland,” said Sarbjit Kunar, Founder and Managing Director of Infinity Communications. “We have come a long way these last five years and are proud to use our expertise to help GHMC partners localize their campaigns and give Swiss-based organizations the chance to extend their reach through unparalleled access to a global talent pool.”

As the exclusive partner in Switzerland, Infinity Communications will join six other European partner agencies including Aurora in United Kingdom, Berbés in Spain, GuessWhat in Portugal, MPR in Romania, fischerAppelt in Germany and Connexia in Italy who work closely to ensure regional programming meets the needs of in-market teams and audiences.

About Global Health Marketing & Communications (GHMC)

Established in 2001, GHMC is the largest and most robust partnership of independent healthcare agencies worldwide, dedicated to improving outcomes through the delivery of dynamic, health-driven experiences that result in meaningful global change. With an average member agency tenure of more than 10 years, the group consists of more than 700 health-specialist communications professionals spanning more than a dozen disciplines, from patient engagement to medical communications to advertising and clinical trial recruitment. The agencies that make up the partnership share a belief in insights-driven strategies and a commitment to collaboration. Today, GHMC has capabilities and reach into more than 60 countries. For more information, visit GHMCNetwork.com or follow us on X and LinkedIn.   

About Infinity Communications

Infinity Communications is a women-led healthcare communications agency with a global reach. Established in 2019 and based in Geneva — a hub for scientific innovation and global health leadership — we work with pharmaceutical, biotech, medtech, and non-profit organisations to create research-driven, strategic communications for a healthier world. Bringing a unique understanding of commercial healthcare and global health landscapes, our multi-lingual team combines deep scientific expertise with creative and strategic skillsets. Together we have delivered on a range of projects that have worked for audiences including patients, healthcare providers, government representatives and high-level policy makers.  

By Chris Bath, Managing Director at Aurora Healthcare Communications

The world is in shock.

Pandemic ‘recovery’; cost of living crisis; rising inflation and geopolitical instability at an all-time high for a generation. We’re in the middle of a polycrisis, and that’s not all.

Around 1.5 billion people will be going to the polls this year, as significant elections are taking place in more than 50 countries which between them hold almost half of the world’s population. 

Uncertainty, then, is a constant we have come to live with. The result of this, is that we have come to crave something many people shy away from: change.

Global change coming to life science is good for all.

The life science industry, often proving to be resistant to most existential crises and pressure, has faced unprecedented low levels of investment, M&A activity and, as a result, lagging clinical pipelines. 2023 saw the lowest number of clinical trial starts since 2018.

If the world is in shock, the industry needs a shock of its own to ignite the change that innovation needs. This change is round the corner.

‘Pipeline in a product’ therapeutics, along with new and complex modalities, that will transform medicine, and, if given the right access environment, will also necessitate a reset, or change, in how we treat disease. Countries are rapidly standing up modern health systems that can accommodate these new innovations (let’s park capacity for a second, because that’s an altogether different challenge) and this rapid expansion requires genuine global expertise.

According to Deloitte, one of the main reasons why larger biopharma organisations miss their growth targets is because of an inadequate understanding of market dynamics and a complete misunderstanding of customer needs. A shameful finding given the hyperconnected world we live in. In today’s world, there really is no excuse, and change is not being embraced to stay in sync with the world today.

A true worldview and ‘global’ expertise then are paramount. But there really is no such thing as ‘global’ when it comes to life sciences. With every border comes a new culture to embrace, a new set of compliance considerations to consider and a new health system to navigate. The reality is that our work needs to resonate with countries and regions far more diverse than the term ‘Global’ allows.

For global strategy to be a success, you need to think ‘Glocally.’

Overcoming tunnel vision by thinking ‘Glocal’

How we tell stories about breakthrough science and the value this delivers to countries with unmet needs, demands a worldview on a range of issues to make sure medicine gets into the hands of those who need it.

Recent changes to EU regulations (for example, the Clinical Trial Regulation and new Medical Device/IVD Regulation) and other market uncertainties, such as cross-border collaborations and their potential impact on market access, are making it increasingly difficult for biopharma and biotech to forge ahead.

For programmes to resonate (and results to follow), multiculture, diversity and the need to consider all stakeholders in the care pathway are important, and that requires more than just a local presence, it necessitates a true understanding of local market dynamics. That means:

• Ensuring clinical trial recruitment materials are trans-created, so they not only resonate in-market, but also, they engage sites and recruit patients, and protocols co-designed with patient experience data.
• Commercial strategies are built with worldwide insight, supporting activities designed to drive uptake of medicines and new technologies through creative-led medical communications.
• Market access plans need to be shaped with payors years in advance of a commercial launch, and the right data generated through clinical development programs to gain reimbursement.
• Building global integrated teams that deliver across time zones to deliver at pace with cultural and compliance understanding built in.

As innovation lays a path for companies to expand internationally, we need to re-calibrate our understanding of the needs of nations and regions and people in a way that demands genuine expertise.

Our clients need partners who understand all these challenges, and in fact are purposefully designed to address and embrace them. So, that’s what we’ve built.

A Global vision with local precision

With decades of experience across every region of the globe, we’ve witnessed firsthand how the nuances of local geographies and cultures influence each phase of drug development and commercialisation. These insights have shaped our approach, leading us to create a platform of services that operate in harmony across the globe, delivering results that are truly greater than the sum of their parts.

By integrating solutions from clinical trial enrollment and medical communications to consulting and advertising, we’ve created an ability to take a wide-angle view, offering comprehensive, end-to-end support that spans the entire lifecycle—from early clinical milestones through to launch and global expansion.

This strategic offering is deeply ingrained in our heritage and our long-standing commitment to Global Health Marketing and Communications (GHMC)—the world’s largest network of independent healthcare agencies. Together, we’ve seen the difference a strategic and sensitive approach to multi-market programmes can make, as part of a deep understanding of healthcare across markets, cultures and codes.

As we seek to deliver change, we need to embrace it. And that’s what a truly ‘global’ partner like Spectrum Science is designed to do. If you want to see what this difference looks like, get in touch.

This article was authored by CEO of our Canadian partner agency, energiPR, Carol Levine

I’m old enough to remember when house calls were a regular part of healthcare. As a child, my pediatrician would come by to take my temperature, listen to my chest, and write a prescription. That was my first experience being cared for by anyone other than my mother’s home remedies, like chicken soup. 

Canada’s healthcare system has grown vastly more complex since those days. Once lauded as a model of socialized medicine, available to all in exchange for our tax dollars, it is now a system where access can be uneven. The wealthier among us can afford to pay for certain services not covered by public insurance—like faster diagnostic tests or elective surgeries—while many others endure long waits within the public system. 

So, how did we get here? Like many other developed nations, Canada faces significant challenges, including an aging population and the strain COVID-19 placed on the healthcare system and its workers. However, our universal healthcare system, while comprehensive, comes with constraints. These include salary caps for doctors, bureaucratic hurdles, and, in some provinces, limits on operating room time and medical school enrollments. The result is a patchwork of access that often leaves Canadians questioning the system’s fairness. 

Consider Quebec, for example. The province has strict regulations on private healthcare, yet private clinics still exist, offering services like colonoscopies to reduce wait times. However, the provincial government has placed limits on these operations, creating tension between the public and private sectors. Meanwhile, if you can afford upwards of $25,000 CAD for a hip replacement or back surgery, you can seek out private options—though these costs and the availability of services can vary. 

So, when did things start to change? When my family doctor retired a few years ago, I faced a tough choice: go without a doctor who knew my family’s medical history or pay for private care outside the public system. I opted for the latter, starting at $2,500 CAD, with a 30% increase the following year. What once felt like a rare luxury is now becoming more common for those who can afford it. For many, it feels like the only viable option in a system where public access is increasingly strained. 

While private access is convenient for those who can pay, it also turns healthcare into a commodity. We now compare prices, locations, and aftercare services like we’re shopping for a new car. Bedside manner not up to par? Let’s find someone more empathetic. 

An article in the New York Times earlier this year reported on the growing private-sector involvement in Canadian healthcare. Canadians might be surprised to learn just how entrenched private medicine has become. According to Dr. Katherine Fierlbeck, a political science professor at Dalhousie University, about 30% of health services in Canada—everything from drugs to physiotherapy—are provided privately. This statistic, however, includes services that have always been outside the public system, like dental care and prescription drugs. 

Dr. Fierlbeck also raises a warning flag. While most private clinics in Canada are small, independent operations set up by local doctors, the door is opening for large, aggressive healthcare corporations, particularly from the United States, to enter the market. If that happens, the landscape could shift dramatically, leading to constant lobbying and lawsuits aimed at expanding the role of private business in our healthcare system. 

The question for Canadians is simple: Are we willing to accept the further privatization of our healthcare, knowing that it could lead to an American-style system driven by profit rather than patient care? While Canada’s public healthcare system remains deeply entrenched, the growing influence of private interests is something we must confront. As the debate continues to unfold, it’s a question we’ll need to answer sooner rather than later.