Internal Communications

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.

In November 2025, leaders from 11 independent healthcare agencies across as many countries, all part of the Global Health Marketing & Communications (GHMC) network, gathered in Singapore for the Annual General Meeting (AGM) hosted by Spurwing Communications. The goal was to explore the evolving landscape of healthcare communications and to tackle the question: How do we stay future-ready in one of the world’s most complex, fastest-changing sectors? 

The meeting was hosted in Singapore, a country that embodies agility, integration, and forward-thinking solutions. Over three days, meeting attendees exchanged insights shaped by their local and regional experiences, while exploring the global trends shaping our industry. 

Navigating Complexity 

Healthcare communications continues to face uncertainty: shifting regulations, evolving policies, cost pressures, and changing patient expectations. AGM discussions emphasized the importance of agility, local knowledge, and global coordination. Across markets, our GHMC partners explored how independent agencies can respond effectively, staying nimble while delivering meaningful outcomes for clients. 

From AI Potential to AI in Practice 

At the AGM 2024 in Milan, Italy, conversations focused on AI’s potential. In Singapore, conversations shifted to AI reality. Our keynote speaker, Jake Wilczynski, Head of Communications APAC at OpenAI, offered thought-provoking insights into the future of AI and encouraged us to “be aggressively curious” as this landscape evolves, highlighting that AI has now become the “front door of healthcare”. GHMC partners showcased real-world applications that deliver faster insights and more effective results while staying conscious of specific issues like privacy, regulation and transparency for all clients, reminding us that the future of healthcare communications is happening now.  

Collaboration That Matters 

Beyond insights and technology, the AGM reinforced the power of connection. Face-to-face collaboration fostered idea exchange, problem-solving, and trust. The three days in Singapore left attendees feeling inspired, reaffirming the value of a network built on shared ambition and expertise. 

Moving Forward 

Healthcare communications is entering an era where agility matters as much as expertise. Our clients need partners who can act quickly without compromising quality, anticipate how global trends unfold locally, and adopt new technologies thoughtfully rather than reactively. 

To learn how our robust global network can support your brand and strategic objectives, reach out to us today. 

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.

By Kaitlin Bowen and Mark Henderson

Recently, partners from around the world gathered to learn, share and connect during the 2017 GLOBALHealthPR^® (GHPR) Annual General Meeting, held in Mexico City. One of the unique aspects we discussed in Mexico is the annual GHPR employee exchange program. We recently interviewed the participants of this year’s program to reflect on the highlights:

 As a part of the GLOBALHealthPR (GHPR) exchange program, Mark Henderson from VIVA! Communications in Australia and Kaitlin Bowen from Spectrum in the United States flew halfway around the world to “swap desks” and experience healthcare communications in each other’s home countries.

The exchange program, designed to enhance the connectivity of GHPR agencies, helps foster collaboration among the independent health and science communications network and enables agency employees the opportunity to gain insight into the drivers that affect health and science communications in other markets.

Kaitlin and Mark reflected recently on the major differences between the two countries and what they gained from their GLOBALHealthPR exchange experience.

What is the major difference you saw between the health industries in Australia and the United States?

Mark Henderson – VIVA! Communications, Australia: While in the States, I learned about medicines when I wasn’t even expecting to, as direct-to-consumer (DTC) advertisements often appeared on television and in magazines – this came as quite a surprise to me. I was enthralled by the advertising, but further to this, the amount of political discussion and conversation in the community around healthcare and medicines. That was intriguing, and I think it’s a good thing.

Living in Australia, we tend to become complacent about our access to free medicines and hospital care (well, free for the most part), and that shrinks the public conversation on healthcare in Australia somewhat. That is, unless one is championing a certain medicinal cause, working in the health industry or battling with a disease that requires difficult to access therapies.

On a slightly different note, I was shocked to see promotion of cigarettes in the U.S. I picked up a magazine at the airport, and was confronted with a discount offer for a new brand of cigarettes. Not just an advertisement, but a discount offer for cigarettes – how can this be allowed?

In Australia, we have so many regulations regarding cigarette advertising in attempts to decrease cancer rates –our laws include plain packaging, locked cabinets and no advertisements for cigarettes. So to see cigarettes advertised in the U.S. was confronting.

Kaitlin Bowen – Spectrum, United States: Due to the restrictions around direct-to-consumer advertising in Australia via the Medicines Australia Code of Conduct, healthcare companies and the PR and marketing agencies that support them must be creative to connect with stakeholders in meaningful ways. Empowering advocacy partners and patients is critical.

Due to this tightly regulated health communications environment, VIVA!’s work tends to be highly patient-centric, which is great. Most campaigns include regional or state-specific patient spokespeople who can provide first-hand commentary on what it’s like to live with a certain disease or condition. This, combined with dynamic content and a the knack for media relations creates  comprehensive patient case studies, videos and infographics (both still and animated) that are really easy for the media to reference and extract for use in their stories.

How does the working culture differ between VIVA! & Spectrum?

KB, USA:  Overall, the team is very collaborative and it’s often all hands on deck to do great work for our clients. Even the agency’s Principal is not afraid to jump in and help, lending her expertise and experience to all aspects of client service, including making pitch calls and proofing content.

Additionally, I found Australians to be quite direct with each other – no sugar coating feedback or direction – which helps keep projects moving along efficiently. I think it also helps boost camaraderie within the agency, which can go a long way for maintaining morale among employees and ultimately helps drive a better quality product for clients.

The VIVA! office had a similar vibe to our Spectrum offices with lots of open, collaborative space and cool, scientific imagery around the office.

I view my Spectrum team as family, so I think the VIVA! gang is pretty much our cousins Down Under – the people, culture and energy in the office space were surprisingly similar to our Spectrum team here in the U.S. That’s the great part about the GLOBALHealthPR network – the agencies are so like-minded not only in our office environments, but also in our values and what motivates us to do great work for our clients.   I feel so fortunate to have had the opportunity to live, work and play in Sydney for a few weeks and form long-lasting friendships with our GLOBALHealthPR partners in Australia.

 MH, AUS: Overall, both Spectrum and VIVA! work in the highly specialised healthcare PR arena, part of which allows us to craft and share the fascinating stories that create buzz and hype around healthcare therapies, medicines, medical research and science.

I was really privileged to meet so many American healthcare PR peers, and was impressed by the different stories and reasons for pursuing healthcare communications. Some of the Spectrum staff have Ph.D.’s and are trained scientists. The knowledge and experience that these experts can lend to the science of health is invaluable, and they are lovely people too!

How will you continue to build relationships across the GLOBALHealthPR network now that you’re back home?

 MH, AUS: I think the amazing thing about the exchange program is that we are visiting and partnering with not just friends, but colleagues. I’m thrilled to be able to have the opportunity to continue to grow and build relationships with all of my healthcare PR peers. It’s something truly unique to GLOBALHealthPR.

I am eager to remain in touch, and to continue working alongside and collaborating with my American counterparts, and friends in the U.S.

KB, USA: In the words of Uncle Ben from Spiderman, “with great power comes great responsibility.” Because I’ve been given the amazing privilege to participate in the GHPR exchange program, I believe it’s important as partners that we continue to support and build the GLOBALHealthPR network on behalf of each of our agencies.

The beauty of GHPR is that each of us are experts in our local healthcare marketplaces, but we have that global reach and connectivity across the world through each partner agency. What’s really special is that we’re not just professional acquaintances, but friends. I remain connected to my VIVA! colleagues on Facebook and always look forward to hearing the latest client updates and the GHPR Annual General Meeting. In the spirit of the GHPR exchange program, I will continue to work to foster collaboration and best practice sharing across the network.

Kaitlin Bowen is an Account Director at GHPR U.S. partner Spectrum. Mark Henderson is the Queensland Branch Manager at GHPR Australian partner VIVA! Communications. To check out Kaitlin’s and Mark’s experiences from the GLOBALHealthPR Professional Exchange Program and other GHPR programming, use #GHPRConnects to connect and join the conversation.