点亮罕见：一项全球倡议如何创造真正的影响力

Every year on Rare Disease Day, landmarks around the world are illuminated in rare disease colours. Since the first edition in 2008, the Light Up for Rare initiative has become a powerful visual symbol of solidarity with the 300 million people living with a rare disease.

But behind every illuminated building lies a foundation of conversations, persistence, and communities coming together.

To better understand how the Light Up for Rare initiative can be successfully implemented in different contexts, three organisations from Northern Ireland, Ukraine, and Ghana shared with us their experiences and advice.

Their stories show that while the gesture is global, its impact is deeply local.

Through these three interviews, we explored the processes they followed, the challenges they faced, and the outcomes achieved, ultimately identifying lessons that could benefit other organisations worldwide.

Awareness Starts with ConversationFor most organisations, Light Up for Rare begins with a formal request to illuminate a building. For the Northern Ireland Rare Disease Partnership (NIRDP), it began with a series of conversations.

Operating across 12 district councils, NIRDP recognised an early challenge: rare diseases were often invisible to those at the local government level.Decision-makers did not always realise that people living with rare conditions were part of their own communities.

Without that understanding, requests to light up buildings risked being seen as abstract or symbolic, rather than meaningful.

To address this, NIRDP chose to focus on building relationships.Over the summer of 2025, the organisation travelled across Northern Ireland to meet mayors, chairpersons, and councillors in person.

These meetings were often attended by people living with rare diseases and their families, helping to ground discussions in real experiences.

We wanted them to see that in their council area, there are people living with rare conditions.”

– Mariam Prasad, Community Support Officer, NIRDPRather than formal presentations, these meetings were designed as open conversations.

By listening to community concerns and sharing lived experiences, NIRDP helped local leaders understand rare disease as a local issue, one that directly affects their constituents.

Only once these relationships were established did the organisation introduce Rare Disease Day and the idea of lighting up council buildings as a public show of solidarity.

Navigating formal procedures still required time and persistence.A volunteer supported the application process across all 12 councils, submitting requests well in advance.

In several cases, applications that had previously gone unanswered were approved once officials could connect the request to the people they had met.

There was a lot of strategy involved, even if we didn’t realise it at the time.Those conversations led to real-world impact.“– Mariam Prasad, Community Support Officer, NIRDPThis approach will result in 10 buildings being lit up, but its impact will go beyond visibility.

Some mayors are already engaging in additional support, including hosting community events and exploring longer-term collaboration.

NIRDP also faced challenges. Scheduling meetings with local leaders and travelling long distances across Northern Ireland required significant time and energy. However, these efforts reinforced a key lesson: face-to-face contact builds trust in a way that emails alone often cannot.

From this experience, NIRDP identified that early, in-person, and community-driven engagement, grounded in specific, local, and human requests – builds understanding, commitment, and stronger institutional solidarity.

By placing people before process and conversations before requests, NIRDP showed how Light Up for Rare can become more than a symbolic act – it can be a starting point for advocacy actions and lasting local change.

When Light Becomes a Symbol of ResilienceFor Rare Diseases Ukraine, Light Up for Rare has never been just about visibility. Over the years, it has become a powerful symbol of resilience, hope, and strength, especially in the context of war.

The organisation has participated in the initiative for several years, lighting up buildings in cities such as Kyiv, Mariupol, and Odesa. One moment, however, would come to define the meaning of Light Up for Rare in a way no one could have anticipated.

On 21 February 2022, Rare Diseases Ukraine illuminated the Okhmatdyt children’s hospital in Kyiv. Just hours later, the war in Ukraine began.

Those were the last hours without war. It was very symbolic for us.”

– Tetiana Kulesha, Chairman of the Council, Rare Diseases of UkraineSince then, the initiative has required constant adaptation.Power outages, security risks, and damaged infrastructure meant traditional approaches were no longer possible.

Yet in 2024, the same hospital, despite having been bombed, was lit up again using large generators over three consecutive nights at the end of February.

When we saw the light again, it was a signal of strength. We showed that we believe in our victory.”

– Tetiana Kulesha, Chairman of the Council, Rare Diseases of UkraineWhat makes this moment particularly striking is that the organisation had not planned to light up the hospital in 2024.Given the ongoing critical situation and the hospital’s condition, it seemed unrealistic.

Instead, the initiative came from the hospital itself.Inspired by seeing Light Up for Rare take place across Europe, the hospital’s leadership reached out.

This shift – from requesting permission to being invited – reflected the long-term impact of visibility and trust built over previous years. Even in a context of crisis, the light became a way to say: we are still here.

Before the war, Rare Diseases of Ukraine had also worked closely with partners to light up buildings in multiple cities, including Mariupol, helping embed the initiative within both national networks.

Looking ahead, the organisation hopes to light up Okhmatdyt hospital again, as well as the church in Kyiv – depending on circumstances.

For Rare Diseases Ukraine, the key lesson is clear: light can carry meaning far beyond awareness. In the darkest of times, it can become a statement of solidarity, endurance, and belief in the future.

Lighting Up Despite the Gaps: Advocacy in GhanaIn Ghana, there is still no national rare disease policy, and for many organisations, even symbolic actions require significant effort and resources. Yet for the Rare Disease Ghana Initiative, this is precisely why Light Up for Rare matters.

We still don’t have a policy. So we continue to call for one.”

– Samuel Agyei Wiafe, Executive Director, Rare Disease Ghana InitiativeSince 2021, the organisation has marked Rare Disease Day by lighting up one prominent building each year — often covering the cost themselves.This includes lighting equipment, electricity, service providers, and logistics.

As a result, the initiative is usually limited to one building per year, making each choice both strategic and symbolic.

Despite these constraints, the organisation has remained committed.Each year, they carefully select a landmark that can maximise visibility and engagement — from national monuments and hospitals to popular public buildings such as theatres and hotels.

Over the years, this approach has led to the illumination of prominent sites, including the Kwame Nkrumah Mausoleum, the National Theatre, the IBIS Hotel near the airport, and, in 2025, the Ministry of Health building following a public Rare Disease Day event.

The process starts well in advance, usually before the end of the previous calendar year, with formal written requests followed by in-person meetings.These discussions go beyond the permission to light up a building.

They also cover access to electricity, security arrangements, and logistics, as the lighting is often linked to a public event.

We don’t just ask to light up a building.We bring the institution in as a collaborator, so they feel part of it.“– Samuel Agyei Wiafe, Executive Director of Rare Disease Ghana InitiativeLighting a building is rarely a standalone gesture.

It is often preceded by a public ceremony or forum, bringing together policymakers, clinicians, patients, families, and the media.These moments create space to discuss the realities of living with a rare disease — and the urgent need for policy change.

While coordinators handle the technical and administrative negotiations, patients and families remain central to the advocacy message. Their presence reinforces why visibility matters in a country where formal recognition through policy is still being pursued.

Looking ahead, the organisation hopes to link future light-ups even more closely to key advocacy themes, such as patient safety and patient involvement. Potential future sites include the Food and Drugs Authority or one of Accra’s most iconic landmarks, the Black Star Gate.

Our dream is that organisations will one day light up their own buildings for Rare Disease Day.“– Samuel Agyei Wiafe, Executive Director of Rare Disease Ghana InitiativeWhile costs remain a major challenge — limiting the initiative to one building per year — collaboration has been the organisation’s greatest strength.

By pairing visibility with dialogue and ceremony, Light Up for Rare has become more than a symbolic act.It is a platform to engage decision-makers, amplify advocacy messages, and keep rare diseases firmly on the national agenda.

Lighting Together, Learning TogetherThe stories shared by organisations in Northern Ireland, Ukraine, and Ghana show that there is no single way to deliver Light Up for Rare.

Each approach was shaped by local realities, resources, and challenges — from navigating institutional processes, to working through conflict, to covering costs in the absence of policy support.

What unites these experiences is not perfection, scale, or ease, but commitment. Even when obstacles arise, the effort to make rare diseases visible sends a powerful message to communities and decision-makers alike: people living with rare diseases matter, everywhere.

For those considering taking part in Light Up for Rare, the message is simple: don’t be afraid to ask, adapt, and begin early.Every effort counts.Every conversation matters.

And every light, in every context, strengthens the global chain of solidarity that connects the rare disease community worldwide.

Melissa Boureghit, Digital Marketing & Communications Junior