Marketing around rare diseases presents a set of challenges quite distinct from those associated with more common conditions. 

There are a host of diseases that, whilst debilitating and life-threatening, are more common and therefore widely recognised – both in terms of their existence and the patient experience. We have all been touched by ‘cancer’. This in turn makes them more straightforward to talk about, as the medical community is at least aware of them (see our recent article on disease awareness). 

On the other hand, with rare diseases, your audience will be either clinicians who are world experts in this therapy area or people who have never heard of the condition. Catering to both extreme ends of the awareness spectrum requires an acute understanding of the science involved (as there are often seriously complicated aspects to the disease) and an empathetic approach, placing the patient experience front and centre in any campaign. 

Marketing with sensitivity turned up to 11

Rare disease marketing is perhaps the best example of Pharmacohesion® in action. The field demands a rigorous approach to working through the insights around the patient, the impact on their lives both of the disease and the treatment, and then working with ways to convey everything HCPs need to know about it as clearly as possible to effect change. 

You have to explore every element of the patient’s story – what does it mean to be living with a particular rare disease? To the patient and also their family? 

As mentioned, common conditions are well known and easy to talk about. In contrast, the distinct lack of familiarity with rare diseases makes them very hard to explain. It’s difficult to say why things are happening when people have never heard of the disease and what might cause it. 

This means we, as medical professionals, have to be particularly sensitive towards the patients’ experience at every stage, from when they may be unaware of the disease to them being aware of initial symptoms, the disease’s impact, the science behind why it happens and finally the possible treatment.

Rare Disease Day (annually on February 28th) might be a collective raising of awareness about rare diseases in general and everyone who suffers with one. However, when there are maybe only a handful of cases per country, it’s important to realise each disease, and often each instance, still needs to be treated on a highly individual basis. 

Explaining the complex causes of a rare disease

In pharma, it might be said that all major diseases (except for some neurological disorders such as Parkinson’s) are fairly well handled or controlled. If identified early enough, treatments can sometimes ensure you die with the disease rather than of it. 

With rare diseases, however, there are usually complex genetic or physiological reasons for them occurring, some of which may not be fully understood. Therefore, they are more difficult to explain, and to treat. This sets a high bar for marketers on the level of scientific understanding they need and the way they convey information about the disease and its treatment. 

The building blocks of trust

Our role as marketers in the rare disease field is to create material that speaks primarily to the clinicians who may need to treat a patient with a rare disease, and therefore also give them the means to have effective discussions with their patients. 

Clinicians need to understand why the disease exists and why the specified treatment works. Patients need to understand why the condition does what it does, why their bodies are changing in this way, and why the treatment works.

In both cases, the target audience will need to feel trust in the science and in the person delivering the information to them. This means, as marketers, we require a sound scientific understanding of the disease – its causes and methods of treatment. Grounding everything we say in clearly-phrased scientific facts will engender trust.

Facts tempered with care

However, it’s not only pure facts that will win over the hearts and minds of HCPs and their patients. Every element of a rare disease campaign needs to dial up its focus on patient care and ensure all language is in tune with therapeutic sentiment. 

This means that, as well as deeply understanding the science, your marketers must also be empathetic to the patient journey. What will be happening to them as they go from noticing symptoms to seeing a specialist, undergoing tests and receiving their diagnosis? What will they be feeling, and how will their age or experience help them understand what’s happening, and deal with it emotionally? 

To deliver an effective solution – one that respects both the patient’s feelings and the science around their condition – you need to be able to communicate complicated information in a straightforward way. 

The key point is to give your audience clear, easy to understand explanations in a language and tone of voice they will appreciate. In all our work with rare diseases such as Fabry disease, PNH, LHON, aHUS and others, the success of our campaigns has hinged around our ability to render a deep understanding of the condition and all the elements around it into plain, easily digestible terms. To make the complex simple.

Make sure your rare disease treatment lands with those who need it most

Please get in touch with the Dice team to talk over a strategy that will ensure your treatment reaches the people in a position to make the most difference to their patients.

We’re delighted to be sponsoring a category at this year’s PM Awards: Disease Awareness (HCPs). Having successfully tackled the creative challenges involved with many disease awareness campaigns over the last few years – particularly in the field of rare diseases – experience tells us what can drive attention and therefore create better patient outcomes.

So, in our view, what does a great awareness campaign look like? What should you have top of mind from the outset, and how do all these elements come together to create an effective strategy? The below points are by no means an exhaustive list, but a good guide to get started.

5 key points to consider in an effective awareness campaign

1. Understand the purpose behind what you’re doing

An awareness campaign exists to shine light on and spread knowledge about a rare disease, or to reveal a previously overlooked or misunderstood aspect of a recognised condition or therapy area. When aimed at HCPs, rather than the public (as is the case with our award), the aim of this type of campaign is usually to pave the way for a new or relaunched treatment and to perhaps frame the brand as the treatment of choice, answering the needs of the patients.

In this way, a disease awareness campaign is not just about making HCPs more aware of the disease in question. It’s also about what they can try to do to treat it. 

Disease awareness campaigns also serve an important secondary purpose: to destigmatise a disease or dispel misconceptions around it. By removing perceived or psychological barriers around the condition, we open people’s minds to new possibilities for treatment and create greater opportunities for patients to enjoy positive outcomes.

2. Put patients at the heart of everything

Continuing from the last point above, your aim with an awareness campaign will always be to drive positive patient outcomes. 

In order to create an effective campaign that really speaks to the hearts and minds of HCPs, you need to perform in-depth research into the people they are dealing with face-to-face on a daily basis: their patients. 

Be empathetic. Imagine yourself in their shoes and pay attention to their stories (either through direct testimony or any accounts online). Find out what the disease can mean to patients. Gain a tangible understanding of the experience of living with the disease and the implications patients (and their families) will be facing, both short and long term.

Then think about the difference it would make if a clinician could easily identify a rare disease. How could they recognise it, diagnose it and then act quickly to treat it, thereby saving the patient from further debilitating effects? All this will serve to place the patient at the heart of the story, and help you paint the HCP as the guide or mentor in their journey back to health.

3. Be creatively engaging

Raising awareness entails getting people’s attention in the first place and serving them with material that will perhaps surprise but will certainly need to be memorable. To arouse an HCP’s interest, maintain their curiosity and make them want to digest your awareness-raising material to the end, you need to think beyond what they will be seeing all the time in medical channels and perhaps break a paradigm or two.

Think creatively about every aspect of your assets and perhaps try the unexpected when it comes to layout, design and messaging. You might try drawing from associations outside of pharma, or be inspired by approaches used in other industries. Or you might simply experiment with new ways of using existing formats or the physical materials.

A word of warning, though. When formulating your creative campaign ideas, remember to stay within parameters that your audience will relate to. Going too experimental or deliberately sensationalist in a medical context, maybe using imagery or subject matter completely unrelated to the disease, will convey a flippant attitude and will likely lead to your audience not taking your campaign seriously.

4. Use language that speaks in the right tone

The way you say something is just as important as what you say. Always pay careful attention to who you are trying to reach with your disease awareness campaign and avoid language that might obscure your message or cause your readers to discount what you are saying.

In the case of HCPs, it’s important to speak to them in their own tone of voice. They are regularly dealing with patients in a way that shows respect, conveys a professional level of care and enhances their own authority. All this builds trust between them and their patients. They are also typically time-poor, with a low tolerance for ‘salesy’ language and emotive descriptions. 

In your messaging, get to the point quickly. Lead with the facts and ensure all wording around symptoms, recommendations and treatment efficacy is clear, succinct and (where possible) supported by references. Also, at this stage, you don’t need to bog your reader down in minutiae – you’re getting them to recognise the disease and remember it. All the above will show you respect the HCP’s intelligence and their time.

5. Build presence

With an awareness campaign, it’s imperative to get your assets in front of the people you are most trying to help – in this case, HCPs. The most effective way to do this is to study which channels your target audience interacts with on a daily basis – particularly if relevant to the disease area – and make sure your campaign shows up and reaches them.

Even if you think the answer is obvious, ask: where are they most likely to notice your campaign? You’ll likely have to consider a range of channels and approaches – online, in print and perhaps traditional media. 

Will your target HCPs typically be more likely to notice material left on display boards or coffee tables? In industry periodicals or mainstream media? Or would a carefully-worded envelope sent through the post compel their attention? Perhaps you need to also consider a webinar or conference presentation? Even social media networks, including LinkedIn and even Instagram or Facebook. Or all of the above? In the quest to build presence, you may have to cover many bases.

Whichever you land on, remember: don’t let channel lead; let creative lead. This way, your campaign will remain consistent and instantly recognisable, wherever it is encountered.

Case example: LHON

Our project for Raxone – Santhera’s therapy for Leber’s Hereditary Optic Neuropathy.

Background: LHON is an extremely rare disease, causing painless vision loss, typically affecting men aged 15-35. The result of mutations in the mitochondrial DNA and often misdiagnosed, the primary symptom is a black spot in the centre of vision of one and subsequently both eyes that steadily expands to cause total blindness. 

Due to its rapid progression, the sooner patients are treated, the better their outcomes. We understood that a low level of awareness of LHON had in the past meant that delays in identifying patients had resulted in negative patient outcomes. 

Features of the awareness campaign:

  • Visually, to create an association with warning signs, we chose a style that reflected road signage – using a simple mix of black and red on white. All type and main icons were flat black, with bullet icons, highlighted statistics and graphic embellishments in red. This created a palpable impact on the reader, while also presenting all information in a way that was easy and quick to digest. 
  • To make sure the leavepiece made an impression and stuck in the reader’s memory – and also made a hard-hitting statement about the ‘black spot’ at the start of sight loss – we incorporated a hole running through the middle of every page of the document, culminating in an ‘hourglass’ icon the reflect the sense of urgency. Time is indeed quickly running out. 
  • All messaging was kept to the minimum, conveying all concepts and information in as quick and clear a way as possible. This left no margin for misunderstanding and wasted no time in getting to the crucial issues around the disease. We wanted people to be engaged, to read and to absorb the key points, and then to act. This campaign achieved that aim perfectly. 

Real-life results

Responses to this awareness campaign were very positive. One in particular stood out to us and brought home the direct impact we can have as marketers on people’s lives.

Following the roll-out of our campaign across Europe, we were contacted by an HCP in northern Norway. They confessed that they would never have diagnosed LHON if it hadn’t been for our campaign, and affirmed that our material for Santhera had resulted in the best possible outcome for their patient: control of the disease and slowing the vision loss.

Common principles

A disease awareness campaign shares many of the common marketing principles that apply to many promotional campaigns across the board. It’s vital to have a complete grasp of your audience’s priorities, to select your channels tactically and to create memorable assets that drive your point home. 

But perhaps most important for awareness campaigns is the element of tone, and an awareness of what tone will connect effectively with your audience. As we’ve mentioned, you need to be precise, factual, concise and respectful of your reader’s time, their intelligence and their patients’ situation. 

At the awareness stage, it’s also important to not get embroiled in every minute detail about the disease, no matter how rare. The aim is to gain attention and effectively convey the facts so HCPs understand how to recognise the disease and act to treat it promptly.

Strip your words back and keep it simple. Speak to the facts, urgency and outcomes. 

The most important point to remember is this: 

You are not just raising awareness to get more patients using your treatment; you’re raising it so no patients get missed.

Give your treatment the best chance of success

Awareness is often the biggest challenge you face in marketing your treatments. For your next awareness project, come to Dice and benefit from creative campaign material that will ensure you’re a brand HCPs remember. 

Please get in touch with the Dice team if you need help creating a strategy that gets your treatment in front of the people who need it most. 

Pharma marketers are forced to be more inventive than most. Our industry thrives on innovation. We’re creatively solving business problems to make brands stand out and remain memorable – with great results.

However, standing out by using gimmicks or creativity for creativity’s sake can backfire in Pharma, where your audience will see right through irrelevant or shallow tactics. It’s vital to focus on your target market and your knowledge of what they need and want to see.

This is especially true in the current fragmented media landscape, where you need to tailor strategies according to your audience’s habits and preferences across each channel. It’s all about striking the right balance between creativity, relevance and authority to earn the attention of your audience.

Overcoming the age-old challenge of differentiation

As an agency, it can be very difficult to stand out. Ultimately, we are all trying to do the same thing and, while our results may be exemplary, others also do a very good job. The way to differentiate, then, is in the way we do it. The unique characteristics, talents and knowledge within our team, a distinctive approach and of course what we’re like to work with as people. Much of our success comes down to the relationships we have with our clients and our in-depth understanding of their products and audience. 

However, our task is to help clients differentiate and stand out themselves. And this means identifying what makes their brand unique, the needs of their target market that are still unmet and the creative parameters expected in their particular field. Once we understand the lie of the land, we can see what opportunities are available to make a campaign stand out.

We’ll also be able to determine which promotional tactics and channels will be most effective. Today, this means considering the full spectrum of media open to us, and understanding how a select few, or maybe all, of them can be used effectively.

Making sense of our fragmented media landscape

The media landscape in Pharma obviously now incorporates many more channels than traditional advertising. Our communications need to reach people across a wide range of media, creating a danger that our messages can become fragmented, inconsistent or uncoordinated. 

In addition to conventional channels, we now also promote brands through social media (paid and organic), emails, online videos, Veeva CLMs/VAEs, treatment-specific websites and online resources, and of course SEO. It can be a challenge to ensure your brand shows up consistently, to a high quality, and in an integrated way, so that all your communications convey your brand accurately and move your target audience towards taking action.

Each channel also contains its own challenges. For example, you might be sending out emails, but where are they going? Are they reaching the right people and getting a response? Or is email even the best channel to use for this audience? With SEO, what search terms are people using to find your treatment? What content will chime with their issues? Or are they simply looking for a way to get in touch?

The answers to these questions will lie in research.

Still the most important factor: know your audience

The first question to ask when you want to find ways to stand out is, who is the audience? In our case, on behalf of our clients, we are looking to target HCPs.

In simplistic terms, we need to know our audience’s issues, fears, greatest hopes and immediate priorities, and also their habits when it comes to what they read, where they go online and how they will be most likely to encounter our marketing.

If we wanted to target the public we would want to know what patients are thinking at every stage of their journey from symptoms and diagnosis to treatment and good health. With HCPs, knowledge of their patients is still invaluable, but we are also considering their own issues to do with budgets, availability, efficacy and other benefits they can relay to those in their care.

This involves a lot of talking. Through focus groups, thought leadership forums, online or in-person meetings, surveys, white papers and more, we can truly understand your audience’s needs and how your treatment can make a real difference over existing solutions. We’ll also know what makes them tick as people, and which channels they will be most likely to respond to.

We can then tailor marketing messaging not only to meet their concerns and professional interests, but also their approaches and preferences for communication. Do they welcome phone or video calls, in-person meetings or emails? Will they need to see long-form content, clear imagery or succinct facts and bullet points? Do they prefer material they can slip into a bag or pocket, or something to keep on a shelf? What will or won’t they expect, and what will be effective?

Creating effective marketing assets in Pharma is often as much about reining yourself in as working creatively. As mentioned in the introduction, going too far either way can put people off. The real creative skill can lie in working with such a reduced palette and yet still providing marketing that stands out.

Ultimately, what will make most impact with your target audience?

Presence and positioning

Throughout our experience, we’ve found that two things have the most impact on a target market: presence and positioning. What might both mean to your brand?


In an important respect, presence will always trump positioning. If you show up everywhere – take out multiple ads across every channel, get your treatment in every magazine and on every billboard, show up constantly in search engines, on every coffee table, in every social media feed, in every online journal – you’ll flood the market with your presence. 

This ensures your brand will be familiar and at the forefront of people’s minds when they or their patents have the issue it solves. The more we see something, the more we like and trust it. There’s also something to be said for recency bias. The last solution you saw will be the first one you remember.


While the above is true, your positioning will play a vital role if you use your marketing in a strategic, targeted way. Great positioning will ensure you maximise every piece of communication. Being clear on your story, distinctive in where you sit in your sector, and using the right language, colour palette, imagery and channels will encourage your target market to feel a connection with your brand. They’ll feel like you already understand them and their values. 

Making your brand attractive to the right people – and placing communications where you know your ideal audience will see it – can double your impact. Coupling position with presence will ensure you are onto a winner.

Made you look! Creativity still works

While the above is true, exciting or unexpected ideas can obviously still be effective. As advertising legend Bill Bernbach said: “Creativity is the most powerful force in business.”

A creative headline, concept or image can create interest, drive greater curiosity and lead to more sales when used in the right context. When all’s said and done, it is your creative ideas and inspiration that will make you and your brand unique. Getting the creative side right is all about knowing exactly what your audience will appreciate (and more importantly, what they will not!) and pushing the envelope into something unexpected.

An interesting exercise is to consider what recent marketing in other sectors has stood out to you? And how could you translate those ideas – which could be around characters, juxtaposition, choices of colours, metaphors or just plain extreme scenarios – into a Pharma context?

How to inject interest into your marketing

Knowing what to do to make your marketing as strong, memorable and effective as possible can only come out of in-depth research into your product, your prospects and your market. 

In the course of creating sales assets, content, messaging and supporting material for our clients’ campaigns, our expert medical writers and designers and developers will follow our proven process of insights, strategy, execution and measurement. In this way, we can determine how best to reach, speak to and connect with your target audience’s needs and concerns. 

In placing this process within a Pharma context – and considering every aspect of the treatment’s journey from ideation to experimentation, finalisation, approval and promotion – we practise something called Pharmacohesion™.


Here’s a breakdown of our process:

INSIGHTS – For every brand, we use our network to explore and define your customers’ issues, mindsets and intent, generating insights that form the foundation of every campaign.

STRATEGY – We establish and create a precise, integrated print and digital medical communications strategy for your brand based on an in-depth understanding of the current market.

EXECUTION – We deploy strategically aligned tactical initiatives across all channels, both digitally and in print, capturing and conveying your key brand concept effectively.

MEASUREMENT – We undertake rigorous analysis throughout your campaign, helping us to gauge efficacy and impact, and refine our approaches to maximise the ROI of Pharmacohesion™.

Pharmacohesion™ helps your brands fulfil the ambitions of the scientists who developed them: to transform the lives of patients with an unmet medical need. 

Give your treatment the best chance of success

Let us help you to create material that will stand out and be a brand that HCPs remember. 
Please get in touch with the Dice team if you need help creating a strategy that gets your treatment in front of the people who need it most.