Cystic Fibrosis: The Brussels University Hospital, a Leading Reference Center in the Fight Against the Disease
As part of European Cystic Fibrosis Week, taking place from November 18 to 24, 2024, the Brussels University Hospital (H.U.B.), a recognized reference institution in this field, highlights the severity and challenges posed by this still-incurable genetic disease
A Disease That Overwhelms Body and Life
Also known as cystic fibrosis, this hereditary condition profoundly impacts the body. For young patients, it is a daily battle against excessively thick mucus that clogs the lungs, obstructs airways, fosters infections, and gradually impairs respiratory function.
As if this weren’t enough, patients also face difficulties in absorbing fats, a relentless side effect that heavily burdens their overall health. For those affected, cystic fibrosis demands constant medical attention and an ongoing effort to maintain an acceptable quality of life despite these challenges.
Ce dispositif unique en Belgique permet aux patients de bénéficier d’une continuité des soins tout au long de leur vie
A Unique Care Pathway from Childhood to Adulthood
In Brussels, the H.U.B. plays a vital role by combining the expertise of the Children’s University Hospital (HUDERF) and the Erasme Hospital. As a reference center for cystic fibrosis, the H.U.B. provides a comprehensive and continuous care pathway that spans from childhood to adulthood.
At HUDERF, care is led by Professor Laurence Hanssens, while Professor Christiane Knoop oversees the follow-up care at Erasmus Hospital once patients reach adulthood. Together, they coordinate the ULB Cystic Fibrosis Center, which integrates these two institutions. This unique setup in Belgium ensures patients receive seamless care throughout their lives.
To ease the delicate transition to adult care, the H.U.B., in collaboration with the Cystic Fibrosis Association, has developed the " Move Up" program. Starting at the age of 15, this program gradually prepares adolescents for the responsibilities of adult care, ensuring a smooth transition from HUDERF to Erasmus Hospital.
A Multidisciplinary Approach for Personalized Care
At HUDERF, the care pathway is supported by a multidisciplinary team composed of doctors, nurses, dieticians, physiotherapists, social workers, psychologists, administrative staff, and pharmacists. This close coordination aims to optimize consultation times and minimize the risk of infections.
Upon arrival, patients are placed in a dedicated room where specialists take turns providing their care. This well-organized approach ensures that treatment is tailored to the specific needs of this demanding condition, which requires daily and intensive management.
A Major Breakthrough with Protein Therapy
Since 2022, a protein therapy developed with contributions from H.U.B. teams has transformed the outlook for many patients with cystic fibrosis. By targeting the genetic causes of the disease, this treatment significantly improves the quality of life for over 85% of affected patients, offering them the hope of a life closer to normal and an extended life expectancy. This is a groundbreaking milestone in the fight against cystic fibrosis.
Hope for Gene Therapy Developments
However, protein therapy does not benefit all patients. For the 10 to 15% who cannot access this treatment, the H.U.B. is actively researching alternatives such as phage therapy and exploring advances in gene therapy. Although still experimental, this approach offers hope for a potential cure by directly targeting the genetic mutations responsible for cystic fibrosis.
Through its commitment, the Université Hospital of Brussels provides patients with the opportunity to grow up with greater peace of mind and ultimately aims to help them achieve more autonomy in managing their condition.
ULB Cystic Fibrosis Reference Center – "HUDERF"
Contact Information:
- Secretary’s Office: +32 (0)2 477 23 41 (mornings only)
- Email: Mucoviscidose [dot] Medecins [at] hubruxelles [dot] be
Team:
- Professor Laurence Hanssens – Pediatric Coordinator
- Professor Christiane Knoop – Adult Coordinator Clinique de Transplantation Pulmonaire et Mucoviscidose | Hôpital Erasme
- Dr. Christine Quentin – Patient Reception
- Ilhame Allami – Social Worker
- Rachida Abdoun – Secretary
- Guy Van Schandevl – Pharmacist
- Lesley Buysens – Dietician
- Véronique Gaspar – Physiotherapist
- Marie Kennes – Psychologist
- Marie-Claire Aerts – Reference Nurse
- France Burny – Research Nurse
