BOKS – Belgische Oudervereniging voor Kinderen met een Stofwisselingsziekte

BOKS vzw, established in 1994, is headquartered in Melsele, Beveren, Belgium. It was founded by a courageous parent couple who, in 1987, discovered that their two sons were suffering from a life-threatening metabolic disease. This realization led them to navigate the complex landscape of medication and special dietary needs, eventually connecting with other parents facing similar challenges. This network of support and shared experiences culminated in the creation of BOKS vzw, a legal entity dedicated to providing information and support to families affected by metabolic diseases.

BOKS vzw exists to support individuals with metabolic diseases and their families. The organization aims to enhance the quality and quantity of life for those affected by these conditions. It seeks to provide comprehensive support through advocacy, education, and community building, ensuring that patients and their families receive the necessary resources and understanding to manage their conditions effectively.

The organization specifically supports individuals diagnosed with metabolic diseases, also known as inborn errors of metabolism. These conditions are often rare and hereditary, affecting the body's ability to process certain substances properly.

BOKS vzw engages in several key activities to fulfill its mission:

Advocacy: The organization works to simplify legislation and administration, promote research into diagnosis and treatment, and ensure the reimbursement of essential medications.

Education: BOKS vzw provides information sessions and lectures to raise awareness and understanding of metabolic diseases among the public and healthcare professionals.

Direct Support Programs: The organization offers individual support to newly diagnosed patients and their families, providing a listening ear and guidance through the various stages of the disease.

Community Building: BOKS vzw organizes family days and weekends to facilitate connections among patients and their families, fostering a supportive community.

BOKS vzw provides a range of support services to patients and their families, including:

Information Hotlines: Offering guidance and answers to specific questions related to metabolic diseases.

Consultations: Providing personalized support and advice to families navigating the challenges of a diagnosis.

Educational Materials: Distributing resources to help patients and families understand and manage their conditions.

Workshops: Conducting sessions to educate and empower patients and their families on various aspects of living with a metabolic disease.

BOKS vzw has played a significant role in securing increased funding for research into metabolic diseases at both the national and European levels. The organization has also been instrumental in advocating for policy changes that benefit patients, such as the reimbursement of life-saving medications and the simplification of administrative processes.