Support Center for Families with Rare Diseases Wins Prestigious European Award

The European organization EURORDIS – Rare Diseases Europe has honored the Support Center for Families with Rare Diseases, managed by the Bulgarian Huntington Association, with the prestigious Black Pearl Holistic Care Award, the association announced.

The award is granted for outstanding contribution to the development and provision of integrated, person-centered, and holistic care for people living with rare diseases and their families. The Black Pearl Holistic Care Award is one of the highest European recognitions in the field of rare diseases and is presented to organizations that implement sustainable, effective, and innovative support models covering the medical, psychological, social, and functional needs of patients.

The Support Center for Families with Rare Diseases has been operating since 2015 and is among the pioneers in Bulgaria in implementing a holistic model of care for people with rare diseases. Since the beginning of 2025, it has also been providing services as a licensed social service—a Center for Social Integration and Rehabilitation with a priority on rare diseases, accredited by the Sofia Municipality.

The center offers comprehensive psychosocial and rehabilitative support through individual and group psychological consultations, psychotherapy, art therapy, rehabilitation, occupational therapy, social work, mediation, and advocacy. Families and relatives of people with rare diseases occupy a central place in the working model, receiving targeted support to cope with the long-term consequences of living with a rare diagnosis.

In 2025 alone, the Center has provided support to over 120 individuals and families with more than 80 different rare diagnoses, with services provided both in person and remotely to reach people across the country.

Alongside direct work with patients and their relatives, the Bulgarian Huntington Association is active in advocacy, raising public awareness, and building partnerships at national and European levels. The organization is a long-standing member of European rare disease networks and actively participates in the exchange of best practices and the development of policies in the field of holistic care.

“This award is an exceptional recognition not only for our team but also for all the people and families who have trusted us over the years. It confirms that holistic care for people with rare diseases is possible, sustainable, and necessary when developed with professionalism, long-term vision, and humanity,” stated Natalia Grigorova, Chairperson of the Bulgarian Huntington Association.

The official Black Pearl Holistic Care Award ceremony will take place on February 24, 2026, in Brussels, as part of the annual EURORDIS awards.