Rare Disease Day 2026
Shaping the Future of Rare
Introducing Rare Next 2026 - Havas Health's commitment to rare communities around the globe, helping shape what happens next in rare.
This year's theme explores stigma in rare disease. Read our Rare Futures Report 2026, a collection of real lived patient & caregiver experiences from the global rare disease community.
Rare Futures Report 2026
Make Stigma the Rare Disease
Exploring lived experience of stigma from 250+ caregivers and people living with a rare condition.
In collaboration with
The Futures Report
Stigma in rare disease is nearly universal. Harnessing emotional experience can shape the future of rare, but to silence stigma we must first understand it.
2026 Futures ReportHealthcare Hurdles
Growing recognition and empathy to overcome care complexities.
Community Driven Stigma
Understanding the emotional and social effects from discrimination rooted in cultural beliefs.
Silencing Everyday Stigma
Silencing the quiet weight of everyday stigma.
Stigma at Home
Building a space with families and caregivers where stigma can't rest.
OUR APPROACH
How we shape
the future of rare
Insight & Research
We conducted a global survey in collaboration with Rare Patient Voice & Unique, exploring lived experiences to understand how stigma manifests in the everyday of those living with a rare condition.
A VOICE THAT HONOURS EXPERIENCE
Emotional experience matters. It shapes how information is received, it builds trust for open communications and builds receptiveness for support. Emotional credibility becomes a foundation for successful brand relationships and meaningful health outcomes.
Collaborative Action
Stigma stands in the way of clear clinical pathways, trust and a consistent quality of life. Yet it is also something the industry has the power to silence. By acknowledging stigma as a central barrier and acting with intention to dismantle it, pharmaceutical and healthcare organisations can help shape the future of rare. When stigma is confronted directly, innovation moves further and faster. This is the vision of Rare Next.
Health equity
Act so that progress benefits every geography and community, not just the well-resourced few.
Uniting rare voices
Build focused coalitions of patient groups to amplify advocacy and drive meaningful change.
Managing the diagnostic odyssey
Cut the 4-5 year search for answers and ease the emotional burden with transparent, patient-centred conversations.
Innovation that fuels hope
Harness AI, gene & RNA editing, quantum computing and needle-free tech to accelerate discovery - and daily life.
Meaningful evidence
Combine patient‑reported outcomes and real‑world data to inform access and value decisions.
VOICES IN RARE
Perspectives that matter
"Making meaningful progress in rare diseases is challenging, but not impossible. The future lies in collaboration across disciplines, borders, and stakeholders bringing together expertise, innovation, and shared commitment."
Managing Director, Havas Life London
"International collaboration is crucial for rare disease advocacy, to help share resources and drive policy."
Chief Executive, Unique
"The integration of technology and AI in rare disease management holds immense promise, but it must be accompanied by robust guardrails to ensure these tools are used responsibly and in a manner that prioritises patient wellbeing and preserves the human element of healthcare."
Digital Creative Director, Havas Life London
"There is no doubt that drug makers working in rare disease areas are beginning to understand and value the power of listening to, and working closely with, rare communities."
Head of Editorial, Havas Life London
"Creativity in rare disease communications is not just a tool – it is essential for transforming the landscape of rare disease communication, its understanding and engagement."
Group Creative Director, Havas Life London
"Healthcare systems could do much to resolve the tension between limited HCP knowledge and patient expectations. This would require a significant shift in priorities, potentially conflicting with broader health-system goals - as connectors with industry and patient advocates, we can support clinicians and ensure they can feel more confident in their shifting role"
Group Strategy Director, Havas Life London
"Not sure who will open this - but just want to say thank you for all your posts about rare disease over the past few days. As someone with an invisible condition, i am moved, i feel seen, i feel hopeful. Thank you"
FAQ
Common questions
Rare Next is Havas' initiative dedicated to shaping the future of rare disease. Through proprietary research, strategic communication, and collaborative action, we work to transform care for the 300 million people living with rare conditions worldwide.
The Havas Rare Next Futures Report delves into the challenges those living with rare disease face across all areas of life.
Our research found that 98% of people surveyed experienced stigma related to their rare disease. Stigma affects quality of life, delays diagnosis, and creates barriers to treatment. We believe making stigma the rare disease is essential to improving patient outcomes.
We take a uniquely collaborative approach, bringing together patients, clinicians, and industry stakeholders. We combine deep data insight with creative communication to drive awareness and action.
Rare Disease Day takes place on the last day of February each year, raising awareness about rare diseases and their impact on patients' lives. RareNext 2026 is our flagship activation for this global awareness day.
Whether you're a patient advocate, healthcare professional, researcher, or industry partner, we welcome collaboration. Reach out via our contact form to discuss how we can work together to shape the future of rare disease.
Ready to shape the future of rare together?
Whether you're a patient, healthcare provider, researcher, or potential partner - join us in creating meaningful connections that transform rare disease care.
Get in Touch