Advocating for the Unseen: A Conversation with Bianca Ozcan on the Namibia Alliance for Rare Diseases

February 19, 2024/Leonard Witbeen

In a recent interview, Bianca Ozcan, the head of the Namibia Alliance for Rare Diseases, sheds light on the organization’s efforts and the challenges faced by those living with rare diseases in Namibia. Speaking from the Rare Diseases Conference in Johannesburg, South Africa, Ozcan emphasized the importance of raising awareness and fostering collaboration to address the unique needs of individuals with rare diseases.

Building the Namibia Alliance for Rare Diseases

The Namibia Alliance for Rare Diseases was initiated by Multiple Sclerosis Namibia, the Cancer Association of Namibia, and the Okanti Foundation. More recently, the Myasthenia Gravis Organization and the Haemophilia Association of Namibia have also joined the alliance. Additionally, smaller rare support groups in Namibia operate under the umbrella of the Namibia Alliance for Rare Diseases. This collaborative approach aims to unite various stakeholders to collectively advocate for those affected by rare diseases.

Representing Namibia at Rarex 2024

Ozcan shared her experience attending the Rare Diseases Conference, known as Rarex 2024, hosted in Johannesburg. The event serves as a platform for sharing experiences, best practices, and advancements in rare disease research, treatment, and advocacy. Ozcan highlighted the resilience of communities in the face of the recent global health crisis, emphasizing the need for collaboration among stakeholders.

Challenges Faced by Rare Disease Patients in Namibia

In her interview, Ozcan touched upon the challenges faced by rare disease patients in Namibia, emphasizing the lack of attention given to this issue. She highlighted the difficulties in obtaining early diagnosis, access to treatment, and solutions to overcome the challenges of equity and equality. Ozcan shared insights from the conference, where a professor from the University of KwaZulu-Natal pointed out the inadequacy of child grants for children with rare diseases, a challenge echoed in both South Africa and Namibia.

Sharing Patient Stories for Awareness

To bridge the knowledge gap and create awareness, Ozcan revealed that the Namibia Alliance for Rare Diseases is actively sharing patient stories on their Facebook page. By sharing two or three stories a week, the organization aims to motivate and encourage rare disease patients, caregivers, and the community. Ozcan stressed the importance of solidarity and the reassurance that individuals are not alone in their struggles.

The Role of the Alliance

As the head of the Namibia Alliance for Rare Diseases, Ozcan highlighted the organization’s role as a link between caregivers, patients, medical professionals, and the Namibian government. Their objective is to explore ways to support those suffering from rare diseases, navigating the complex challenges faced by patients and their families.

Conclusion

Bianca Ozcan’s interview provides a glimpse into the passionate advocacy work carried out by the Namibia Alliance for Rare Diseases. By participating in international conferences, sharing patient stories, and collaborating with various stakeholders, the organization strives to bring attention to the often-overlooked challenges faced by those living with rare diseases in Namibia. As we commemorate Rare Diseases Day globally in February, Ozcan’s efforts remind us of the importance of unity and compassion in addressing the unique needs of the rare disease community.