How much can we truly know about someone from what we see? And how much of what we believe about others is shaped by stories we have never taken the time to hear?

These questions are at the heart of Invisible disability makes humanity visible, an international communication campaign created by Elena Pomană, founder of the Romanian nonprofit organisation Asociația Dăruiește Fericire (Give Happiness Association).

At its centre is her autobiography, 1 in 2 Million: Between the Silence of God and the Noise of the World, a deeply personal work that opens conversations about identity, faith, freedom, dignity, human relationships and belonging.

Elena’s life has been shaped by an extraordinarily rare experience. Fibrodysplasia ossificans progressiva (FOP), a progressive genetic condition, has profoundly influenced her journey. Yet the story she has chosen to share extends far beyond its medical dimensions.

Through her book and the campaign built around it, Elena challenges a familiar human tendency: believing we understand someone before we have truly listened to their story.

When a personal story becomes a wider conversation

Within the pages of 1 in 2 Million: Between the Silence of God and the Noise of the World, readers encounter a story of choices, loss, hope, faith and doubt. It explores the relationship between people and their limitations, the uncertainty of the future and the ways in which unexpected circumstances can reshape our understanding of life.

What happens to our dreams when circumstances change? How do we imagine a future when things we once took for granted become inaccessible? And how much of what we believe about others is based on what we genuinely know?

The autobiography does not ask readers to identify with Elena’s circumstances. Instead, it invites them to recognise questions and emotions that may resonate with their own experiences.

This approach also defines the campaign.

Rather than treating disability as an isolated subject, Invisible disability makes humanity visible connects personal experience with wider conversations in education, healthcare, culture, spirituality, social inclusion and human rights.

The campaign raises awareness of FOP while also examining how prejudice, assumptions and social expectations can influence the way people see and treat one another.

Its central message is not that everyone shares the same experiences, but that differences do not erase the human needs, emotions and questions that connect us.

From Romania to international audiences

The campaign’s first phase ran from March to September 2026 and was implemented without investment in paid advertising.

Despite limited financial and technical resources, the autobiography reached more than 1,256 readers and received over 115 reviews during its first six months.

The book was introduced to audiences in cultural, educational and professional settings, both in Romania and internationally.

One significant international context was European Diversity Month 2026 in Brussels, where the autobiography was presented through an initiative connected with the Romanian Diversity Charter.

In Romania, the book also reached audiences through cultural and community settings, including a county library and the literary and artistic salon Armonii și zâmbete.

These opportunities brought the story into conversations extending beyond the rare disease community, connecting it with readers and professionals interested in literature, diversity, inclusion and the human experience.

For Elena, reaching different audiences matters because the book was never intended to speak exclusively to people affected by a rare condition. Its themes invite reflection from anyone willing to question their assumptions about others.

Recognition across literature, healthcare and social impact

The first phase brought recognition in several fields.

In the United States, 1 in 2 Million: Between the Silence of God and the Noise of the World was named a finalist at the 2026 National Indie Excellence Awards and received a five-star review from Readers’ Favorite.

The international campaign was also named a finalist at the Romanian Healthcare Awards 2026 in the Medical Campaign category.

Elena’s wider work received recognition through the Gala Femeilor de 10 trophy, while her personal story and the association’s projects were featured on Născut în România (Born in Romania), a programme broadcast by Radio România Cultural.

Behind these results lies an important part of the story.

Elena does not have a permanent team or the support of a communications agency. She has personally developed and coordinated much of the campaign’s strategy, editorial content, promotion and partner relationships, undertaking responsibilities that would ordinarily be shared among several professionals.

The achievements demonstrate what an independent initiative can accomplish, but they also reveal the practical challenges of sustaining an international project with limited resources.

The people who helped make it possible

Behind the campaign’s achievements are not only Elena’s determination and personal efforts, but also the trust of people and organisations who recognised the value of a mission born from an extraordinarily rare experience.

The campaign’s first phase received sponsorship support from TVP Family Office and Editura Măiastră, while partners including the Romanian Diversity Charter, Living Library, PENNY, Tiplog and Healthy Vibe contributed to the wider network of support surrounding the initiative.

These contributions have taken different forms, from financial and editorial support to visibility, professional connections and opportunities to reach new audiences.

For Elena, recognising these contributions is about more than acknowledging organisations. It is about recognising the people behind them who chose to believe in an idea and help it grow.

“I don’t want the rarity of my experience to mean that I must also stand alone in what I am trying to build,” she says.

As the campaign enters its next phase, Elena hopes to expand this circle of support, creating new opportunities for the autobiography and its message to reach more people, communities and countries.

A Romanian voice in the international FOP community

Elena is a member of IFOPA’s International President’s Council, an IFOPA ambassador, and an ambassador for the Romanian Diversity Charter.

Through her international involvement, she contributes to raising awareness of fibrodysplasia ossificans progressiva, encouraging access to reliable information and supporting conversations about the needs of affected individuals and their families.

FOP is an extremely rare genetic condition that can severely affect mobility and independence. Medical research, specialist knowledge and appropriate care remain essential for the community.

Elena’s advocacy also draws attention to aspects of life that cannot be fully described through clinical information: relationships, social participation, access to opportunities and the right to make choices about one’s own future.

Her work brings these perspectives into dialogue without suggesting that every person affected by a rare disease experiences life in the same way.

A decade of building opportunities for dialogue

In 2016 Elena founded Asociația Dăruiește Fericire, through which she has developed social, educational and cultural initiatives.

Among them is Voci Curajoase (Courageous Voices), an international platform featuring more than 49 conversations with guests from different countries and professional backgrounds.

She also created P.O.C. – Poppy Offers Courage, an educational campaign based on her children’s book The Adventures of Poppy – The Puppy with a Heart of Gold. The project explores empathy, courage and acceptance of diversity through storytelling.

These initiatives have distinct purposes, but together they reflect Elena’s commitment to communication that creates opportunities for understanding and meaningful exchange.

The next chapter: making togetherness tangible

The period from March to September 2026 marked the campaign’s first stage, not its conclusion.

Invisible disability makes humanity visible was conceived as a long-term initiative, with future stages intended to bring the autobiography and its themes into new communities, countries, educational settings and professional conversations.

Expanding partnerships will be important to that development, particularly for increasing the campaign’s reach and creating further opportunities for dialogue and awareness.

The title 1 in 2 Million reflects the extraordinary rarity of FOP. For Elena, it also expresses the deeply personal reality of having an experience that very few people know firsthand.

Yet rarity should not have to mean isolation.

Her campaign began with one person’s story, but its future depends on the willingness of others to listen, participate and help carry its message further.

The results of its first phase show what has already been possible. The next challenge is not simply to reach more people, but to create more opportunities for genuine understanding between them.

Because no matter how much courage it takes for one person to begin, some things can only be carried forward together.

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