Amplifying the Voice of an Unheard Community

Communicating with — and for — the rare disease community 

Living with a rare disease has always been a challenge, as patients frequently have difficulty finding treatments or medical professionals who even understand their condition. During COVID-19, the loneliness and frustration of people in this community have been significantly exacerbated. Patients have faced undiagnosed conditions and missed appointments, and clinical trials are struggling with recruitment and retention, which could delay potential advancements.

That’s why it’s critical for healthcare communicators to come together on Rare Disease Day — this Sunday, February 28. Recognized in more than 100 countries, Rare Disease Day offers support to the 300 million people living with rare health conditions.

The theme of this year’s event is “Rare is Many, Rare is Strong, Rare is Proud.” The message seeks to comfort and empower a community that has, at times, felt left behind, and that has lost their voice over the past year.

The numbers are alarming. A EURODIS survey reports that during the first COVID-19 lockdown, 84% of people in Europe living with a rare disease experienced disruption of care. Among those who reported this, six out of 10 people were unable to receive therapeutic treatments, such as infusions for those with hemophilia.

As health care communicators, we must find ways to lead with purpose and create positive change. We can help the rare disease community find their voice, cut through the storm of COVID-19 news, and help them regain confidence to feel heard and seen during times of crisis and beyond, to ensure continuity of care.

Here are three ways we can create meaningful, authentic communications, while championing the community’s key messages for a year of improved treatment access.

Motivate patients through authentic storytelling

Rare disease communities are uniquely close-knit. As Anne Nijs, transformation lead, Rare Conditions for Roche, explained, “If something happens with a patient in China, they know about it in Brussels.”

Through communications, we can harness this strong connection and amplify a collective, unified voice that says, “Rare is many.” We can activate and empower members of this community to create further awareness, support or advancement.

At WE, we have seen this approach in practice with our US client, Horizon Therapeutics, and our work on Thyroid Eye Disease (TED). In 2020, we launched the first-ever TED Awareness Week and digital “morning show” TED Today to bring macro attention to this rare condition, and empower patients through education, connection and inspiration. WE also manages the Listen to Your Eyes Facebook page, where patients and caregivers can have open conversations, find support and learn how to best manage TED.

Amplify the right voices

Championing patient opinion leaders (POLs), or patient influencers, can be an effective way to engage others in the community and ignite new behaviors. It can also help reveal the strength of the rare disease community. When communicating with rare disease audiences, we can ensure meaningful resonance and engagement by demonstrating an understanding of their language, unmet needs and real-life perspectives.

In 2020, Takeda launched an awareness campaign in the UK to highlight voices from across the entire rare disease community in partnership with 13 advocacy groups, including The Haemophilia Society and Genetic Alliance UK. The campaign, “I am Number 17,” brought together people with little-known conditions to highlight the fact that one in 17 people in Britain are affected by a rare disease.

The campaign amplified the voices of 17 individuals, who spoke openly about living with a rare disease or condition or caring for a child with one. This strategy confirmed that campaign impact is higher when the messages come from people who live this experience, as opposed to a pharmaceutical company funding it.

At launch, the campaign secured coverage on Sky News, BBC North and ITV Wales, and saw almost 200 social media posts — reaching over 600,000 people in the first few weeks.

Use art to transform public perceptions

Living with a rare disease can have a profound, negative impact on mental health, leading to anxiety, stress and emotional exhaustion, according to the Rare Disease UK report in 2018. As we consider our engagement approach, it’s important to recognize the broader impacts of rare diseases that go beyond physical manifestations.

As communicators, we can combat patient isolation by bringing the rare disease story to the forefront, while maintaining intimate communications on and offline.

This level of intimacy is important in communications, according to Rick Guidotti, a photographer and founder of?the nonprofit Positive Exposure™, which uses the arts to transform public perceptions of people living with genetic, physical and cognitive differences. Partnering with WE, Guidotti created an exhibition to raise awareness of Hunter Syndrome’s characteristics and symptoms, with both doctors and the general public.

Called “Hunter in Focus,” the worldwide exhibition tells the story of nine Hunter patients in Poland, Germany and the US. The project aims to inform the public of this rare metabolic disease and help instill a sense of pride for those in the rare disease community. The exhibits took place in 17 countries and were translated into multiple languages, reaching more than 50 million people globally.

The past year has taught us lessons on how to maintain trust and engage patients, and we need to take these insights through the remainder of this crisis and into the future. As an agency that works closely with communities needing highly personalized communications, we understand how important understanding, authenticity and purpose can be to empower and deliver meaningful change.

At WE, we’re proud to stand with our clients and partners working in the rare disease space to present unique experiences in a meaningful way, deliver a positive impact for treatment access and motivate patient empowerment. We help challenge common misconceptions on Rare Disease Day and throughout the year.

Want to know more? Explore our work in transformative healthcare communications, or reach out today to discuss how WE can support you in telling stories, inspiring patients and reaching important stakeholders.

Image courtesy of Rare Disease Day