Patient pathways must improve in Bulgaria – First national campaign on sarcoma shows how

 

 

By Lidiya Vitanova

Fifteen years old. That is how old our son was when osteosarcoma took his life.  Like many parents confronted with a rare cancer diagnosis, we entered a world we had never known existed. A world of unfamiliar medical terminology, urgent decisions, uncertainty and fear. We searched relentlessly for reliable information, experienced specialists and answers to questions that no parent should ever have to ask.

What we found was that, in Bulgaria, structured information about sarcoma was almost impossible to find. There was no single place where patients and families could learn about the disease. Little public awareness. Very limited guidance on where to seek specialised care. For families already overwhelmed by a life-changing diagnosis, navigating the healthcare system often became another battle.

In the midst of our own loss, we made a promise: No patient and no family should ever have to face sarcoma without knowing where to go, whom to trust or where to find help. That promise became the foundation of Together Fighting Sarcoma in Bulgaria.

Our mission is to change the experience of every person diagnosed with sarcoma in Bulgaria - to ensure that patients have access to trustworthy information, can find the right specialists sooner and become part of a community that understands the journey they are facing. Over the years, that promise has grown into advocacy, collaboration with healthcare professionals, educational initiatives and awareness campaigns.

The first national campaign on sarcoma symptoms in Bulgaria - recognised this year by SPAGN with an Advocacy in Action Award - was another step towards fulfilling the promise we made many years ago: that no family in Bulgaria should have to navigate sarcoma alone.

Awareness is crucial where expertise is still developing

For us, the campaign was never only about raising public awareness. It was about changing the starting point of the patient journey. In countries where sarcoma expertise is still developing, the first challenge is often not the treatment itself - it is reaching the right specialist in time. Across Central and Eastern Europe, remarkable progress has been made over the past decade. Dedicated multidisciplinary teams are being established, international collaboration is growing, and expertise continues to develop. Yet, significant disparities remain in early diagnosis, access to specialised care and treatment pathways.

Awareness helps patients recognise that persistent symptoms deserve further investigation. It encourages healthcare professionals to consider sarcoma among the many possible diagnoses. Most importantly, it helps patients reach specialised teams earlier, where treatment decisions can be made by professionals with experience in these rare and complex tumours. For countries like Bulgaria, awareness is therefore not a standalone objective. It is one of the foundations on which better sarcoma care can be built.

A multi-channel campaign influences public conversation

People receive health information in different ways. Some trust television, others rely on online media or social platforms, while many only begin searching after hearing the word sarcoma for the first time. That is why we chose a multi-channel approach, combining national television, health programmes, digital media and social platforms to reach people wherever they were looking for information.

Just as importantly, we wanted the campaign to speak with two voices: 

• The first was the voice of medical expertise. Bulgarian medical oncologists joined the campaign to explain the warning signs of sarcoma, the importance of timely diagnosis and why patients with suspected sarcoma should be referred to specialised multidisciplinary teams whenever possible.
• The second was the voice of lived experience. Patients and families shared their stories - not to evoke sympathy, but to help others recognise themselves in those experiences. Behind every delayed diagnosis, every unanswered question and every search for information was a real person. Those stories reminded us why awareness matters in the first place.

Alongside the campaign, national television interviews and dedicated health programmes created an opportunity to bring sarcoma into the public conversation - something that had rarely happened before in Bulgaria.

Perhaps just as importantly, the campaign reflected a quiet but meaningful change that has been taking place over the past few years. A small but highly committed group of clinicians has been steadily building expertise in sarcoma, strengthening collaboration and working alongside patient organisations to improve care. In a rare disease like sarcoma, progress is not measured by the number of specialists. It is built through dedicated teams, continuous learning and collaboration. Giving visibility to this expertise was one of the campaign's most important achievements. Because expertise can only change lives when patients know it exists.

Beyond the campaign

Receiving the third place of SPAGN's Advocacy in Action Awards was a great honour for our organisation. It was a meaningful recognition from a community that truly understands the challenges of improving sarcoma care. But the award is not what defines the success of this campaign. Its real impact will be measured differently…

… by the patient who recognises that a persistent lump should not be ignored;

…by the parent who seeks a specialist opinion sooner;

…by the general practitioner who remembers that, although rare, sarcoma should be considered; and

…by every family that no longer has to navigate this journey without knowing where to go.

Over the past two years, we have learned that awareness alone does not change outcomes. Awareness must be followed by expertise. Expertise must be accessible. And patients must know where to find it. That is why patient organisations have a unique role to play.

We do more than raise awareness. We connect patients with trusted information. We help families navigate an unfamiliar healthcare system. We build communities where people find understanding, support and hope. We work alongside clinicians, institutions and international partners to strengthen the pathways that every patient deserves. For countries where sarcoma expertise is still developing, these partnerships are essential. Because better sarcoma care is not built by one campaign, one organisation or one institution. It is built by people who are willing to work together, learn from one another and keep moving forward - always with patients at the centre.

Our campaign may have come to an end, but the work continues. Because every patient deserves the opportunity to reach the right expertise, at the right time, and to receive the best possible care.

 

 Credits:  All photos by Uli Deck for SPAGN.