Meet France's certified center of expertise for rare hepatic diseases - Hôpital Antoine-Béclère in Clamart! Officially recognized by the French Health Ministry in 2005, this center has a unique specialty in rare liver metabolic disorders with care spanning from newborns to adults.

🔬 Specialized hepatic expertise:

Rare Hepatic Disease Focus:

• Glycogen storage diseases (GSDs)
• Crigler-Najjar disease
• Galactosemia
• Hereditary fructose intolerance

Unique Lifespan Approach: Their particularity is providing care from newborns to adults, developing networks with adult departments unfamiliar with these rare conditions.

https://preview.redd.it/g6blvixzpunf1.jpg?width=1280&format=pjpg&auto=webp&s=5130a82917c960f3f0bb5bd7213c2d8c965232b8

🌟 French network integration:

National Leadership:

• Coordinator of "Filière G2M" - France's metabolic diseases network (certified 2013)
• Co-coordinator of "Plateforme d'expertise Maladies Rares Paris-Sud"
• Active contributor to France's national rare disease registry (BNDMR)

Comprehensive HUPS Network: Part of Hôpitaux Universitaires Paris Sud with access to:

• Transplantation services
• Neurosurgery and specialized procedures
• High-quality transition care from pediatric to adult services
• Rehabilitation and palliative care

🎯 Innovation & research leadership:

Cutting-Edge Treatments:

• "Glycosade" dietary studies - new uncooked cornstarch from Vitaflo
• Revolutionary phototherapy devices - optical fiber sheets for Crigler-Najjar
• International gene therapy trials - first Crigler-Najjar gene therapy (2017) with Genethon

Research Excellence:

• Hyperproteic and beta-hydroxybutyrate diet testing
• Natural history studies and registries
• International collaborations with Netherlands, Italy for clinical trials

Educational Mission:

• Patient family education days with medical and dietary programs
• SSIEM Academy lectures and international teaching
• Good practice guidelines development for multiple diseases

Patient Partnership: Strong collaboration with patient organizations, including therapeutic education programs and family support services.

A perfect example of French medical excellence combining innovation, education, and patient-centered care! 💙

Learn more: https://metab.ern-net.eu/hcp/hopital-antoine-beclere-service-de-pediatrie-ap-hp/

#MetabERN #RareDiseases #France #HepaticDiseases #CriglerNajjar #GSD #Galactosemia #Healthcare