Empowerment through social media

A strategic media engagement workshop had a far-reaching and long-lasting impact on raising the voice of Romania’s haemophilia community.

A lack of information

“People with haemophilia in the provinces of Romania were isolated and suffering, without knowing that haemophilia care and treatment was available,” explained president of NNHF co-partner the Romanian Haemophilia Association Daniel Andrei.

Engage and unite

In June 2018, at the project start, representatives of the two patient organisations, the Romanian Haemophilia Association and the National Association of Romanian Haemophiliacs, took part in a NNHF strategic media engagement workshop. Its purpose was to strengthen the communication skills of the haemophilia community and, importantly, to unite and empower them to run a strategic awareness campaign across different regions of the country by engaging local stakeholders.

A national social media campaign

In 2019, the most tangible outcome of the workshop came fully into focus. It was a high impact national social media campaign ‘Together for Zero Bleeds’.

The project team launched the ‘Caravana de Hemofilie’, developing a strong visual identity in alignment with their social media campaign under the tagline ‘Together for Zero Bleeds’ for the events they were going to organise. The first part of the Caravan focused on informing people with haemophilia about their rights to access care. The second part focused on exercise and dental care, involving physiotherapists and stomatologists.

Convinced that using social media to engage people with haemophilia in the regions would be beneficial, they launched a dedicated Facebook page. The page served to cascade the invitation and information for each of the workshops organised in the regions of Romania. It also served as a great engagement tool, as after each event the workshop content, photos, live videos and participant testimonials were shared. The campaign was analytics-based so it was possible to monitor and target for audience engagement.

“We were really pleased that through our Facebook campaign we were able to reach out to so many that were not able to attend the events in person. We were excited to see such high levels of motivation and involvement from people with haemophilia, as well as healthcare professionals even online,” said Valentin Brabete, programme coordinator at NNHF co-partner the National Association of Romanian Haemophiliacs.

The healthcare professionals who took part in the regional events included haematologists, physiotherapists, nurses and dentists.

“The project had the significant impact of engaging and empowering people with haemophilia across the country to increase awareness of why and how to access proper care – crucial for a better quality of life. We were amazed by the synergistic effect of bringing together people with haemophilia, friends, families and healthcare professionals both face-to-face as well as across social media, an effect that we hope has irreversibly turned the tables in the management of haemophilia and other rare bleeding disorders in our country,” Valentin Brabete added.

Naturally, the project team also worked closely with local haematologists and other healthcare professionals who provide the care in each region.

Throughout the project, the team’s approach demonstrated success in bringing significant impact to the individual lives of many people with haemophilia in the regions of Romania.

Back to the Year in review 2019