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What is porphyria? Porphyrias are rare disorders caused by a deficient production of haem, an essential molecule for the transport of oxygen (via the haemoglobin) and the elimination of medicines (via the cytochromes). Depending on the type of porphyria these diseases result in abdominal pain,  neurological disorders and/or skin problems. Some crises can be triggered by certain medicines, fasting, alcohol or an infection. In most cases porphyrias are hereditary diseases that develop during adulthood. Some of the skin problems can become apparent during childhood while others can be secondary to other health problems. The diagnosis is established by blood, urine and genetic tests. Treatment of porphyria Treatment of porphyria depends on the type of porphyria. Acute porphyrias require a multidisciplinary approach based on prevention and the treatment of acute attacks. Haem is administered via a central venous catheter in acute situations.  Pain management sometimes requires the administration of powerful analgesics. Neurological disorders can require specific care.  Prevention consists principally of  eliminating trigger factors such as certain medicines (especially the contraceptive pill) and alcohol.  Certain severe forms may require a liver transplant.  Recently, a new treatment with Givosiran has made it possible, under certain specific conditions, to improve the quality of life of patients who suffer recurring acute attacks of porphyria. This can only be prescribed following an initial assessment at one of the 2 reference centres in Belgium, one of which is at the Brussels University Hospital (H.U.B) and the other at UZ Leuven university hospital. When the porphyria takes the form of a skin complaint, treatment can be by bleedletting, medicines and/or protection against the sun.  In the long term, porphyrias  can be accompanied by complications such as high blood pressure, chronic kidney disease or liver problems.Regular follow-up with a specialist is therefore essential to prevent acute attacks and to identify complications related to the disease. Our specialists Need some medical advice?Dr. Tom AbrassartHématologistSpecialized in porphyria Make an appointment Focus The Hematology Department of the Brussels University Hospital (H.U.B) and the Medical Chemistry Department of LHUB-ULB together form the Belgian Porphyria Centre, which is one of the 16 expert clinical centers for porphyrias (PECC). In Belgium, it is one of the two centers authorized to initiate treatment with Givosiran.The Medical Chemistry Department is one of the specialized centers in the international network dedicated to porphyria, IPNET. It also holds recognition as a National Reference Center for Rare Diseases for certain analyses related to porphyrias. Discover our Hematology Department Associate doctors Prof. Frédéric Cotton - Head of Medical Chemistry Department - Laboratoire Hospitalier Universitaire de Bruxelles (LHUB-ULB).Prof. Fleur Wolff - Head of Hormonology Clinic -  Laboratoire Hospitalier Universitaire de Bruxelles (LHUB-ULB).Ph.Biol. David Fage - Medical Director - Special Biochemistry -  Laboratoire Hospitalier Universitaire de Bruxelles (LHUB-ULB).

Image Access and parking Here you will find full details concerning addresses, access, car parks, signposting and PRM facilities Image Consultations and Hospitalisation All you need to know Image Day hospital The Day Hospital welcomes patients for surgery and provides treatment for pain relief. Image Blood tests Do you need to have a blood test? Find all the information you need here. Address Hôpital Erasme Route de Lennik 808 1070 Bruxelles Belgium Phone +32 2 555 3111 Email contact@erasme.ulb.ac.be Schedule Ouvert 24 heures GPS coordinates 50.814404685823845 4.265633421008964 Image Useful links Mediation and patients' rights Social services department Moral, religious or philosophical assistance Shops / cafés Wifi Volunteers Financial conditions International patient

We suggest you to pack certain items: Pyjamas and nightshirts Dressing gown Comfortable, non-slip shoes (slippers)  Underwear Necessary toiletries (toothbrush, toothpaste, razor, soap, comb, hair brush, towel, face flannel)   Any medicine you take regularly, in original packaging (or at least the list). We ask you to make a list of all the medicine you take, with or without prescription, whether daily or occasionally. Also make a list of medicines to which you are allergic or that disagree with you. You can give these lists to the nurses at the time of being admitted to the unit.  A thermometer issued at the time of a previous hospitalisation. If you don't have one, you will be issued with one – which you can take with you when you leave – and for which you will be invoiced.  Your support stockings or body band if requested by the doctor. Also remember to pack some books, newspapers, laptop, PC, charger, etc.  If you wear glasses or contact lenses, dentures or a hearing aid, please deposit them in the case or other recipient provided.  The day before your surgery, please remember to: Take an antiseptic shower / shampooing (if recommended) Remove any nail varnish and false nails, in gel or resin, from your hands and feet Cut and file your nails Remove any make-up, false eyelashes, jewellery, piercing Do not eat, drink or smoke after midnight!!   Please follow strictly the instructions of your anaesthetist regarding any medicines that you should or should not take on the day itself or the previous day.  Preparing your belongings before hospitalisation to make your stay as comfortable as possible

The Erasmus Hospital Communication Department is at the disposal of the media for any request for interviews, reports or photographs. We will be pleased to direct you to the specialist best able to answer your questions.  Director of Communication Frédérique Meeus frederique.meeus@hubruxelles.be +32 2 555 84 30 +32 499 54 05 16 Media Officer Louis Dijon louis.dijon@hubruxelles.be +32 478 83 06 49 Press releases The hospital and YOU : Your hospital’s magazine Whether you are a patient, relative of a patient, future patient or visitor, we invite you to discover the H.U.B’s new magazine:  “The hospital and YOU”. Packed with information and news on our care and care staff, our fields of expertise and innovations! Your health is at the centre of our concerns.  Discover all the issues here and keep up to date on all that is happening at the H.U.B! File hub_decembre_2023.pdf

“Henri Sliwowski” Reference Centre for the neurodevelopmental follow-up of children born very preterm.  Image The Reference Centre Follow-up of very preterm infants: essential support for a brighter futureThe birth of a very preterm infant is both a profoundly challenging and hopeful experience. Thanks to remarkable progress in paediatric medicine, the survival chances of babies born before 32 weeks of pregnancy or weighing less than 1,500 grams have improved considerably.However, these advances come with new challenges: such children remain at increased risk of developing motor, cognitive, and socio-emotional difficulties, as well as behavioural disorders or sensory impairments.This is why specific and regular follow-up is essential. It not only allows potential difficulties to be detected at an early stage, but also provides the opportunity to introduce tailored solutions that support the child’s future development.This programme is designed to give children born very preterm the best possible chance to thrive, while offering families reassurance and support tailored to their needs.%20secmed [dot] neuroped [at] hubruxelles [dot] be (Envoyer un message) Care that keeps pace with medical progress Follow-up is based on a multidisciplinary approach that brings together various experts: paediatricians, a paediatric neurologist, physiotherapists, psychomotor therapists, speech and language therapists, and neuropsychologists.The follow-up includes four assessments (A, B, C, D) scheduled at 6 months, 1 year, 2.5 years and 5 years of age.If further follow-up is required, doctors will refer you to external therapists (speech therapist, physiotherapist, psychomotor therapist, psychologist), depending on your child’s specific needs.  The aim is to intervene as early as possible in order to: Stimulate motor development in cases of delay or motor difficulties.Promote harmonious cognitive development, particularly in the presence of learning difficulties.Support parent–child interactions to help prevent potential relational difficulties.Monitor sensory abilities, such as vision and hearing, which may be affected by prematurity.Recent studies confirm that early screening, combined with prompt intervention, can significantly improve the quality of life of both children and their families. Dr Florence Christiaens PHU – Department of Paediatric Neurology, Hôpital Universitaire de BruxellesPhysician, Paediatric Neurology, Specialist in Rehabilitation"The follow-up of very preterm infants is a genuine breakthrough in child health. It represents an essential safety net, ensuring that these fragile children receive optimal development and tailored support to meet their needs.Your child has already shown incredible strength by coming into the world earlier than expected. With this follow-up, you can be confident that they will receive the support needed to grow and flourish, step by step, by your side." Prendre rendez-vous  Image A team of specialists by your side Vojtech Stejskal, Ludovic Legros – NeonatologistsFlorence Christiaens – Paediatric NeurologistBrigitte de Bast, Anne Goffart, Anne Soquay – PhysiotherapistsMorgane Colin, Camille Schlogel – Neuropsychologists / PsychologistsMarie-Amélie Ponteville – Speech and Language Therapist Partners The activity of the accredited centre for the follow-up of very preterm infants, Henri Szliwowski, takes place on two sites: the H.U.B. (Erasme site) and Delta.Children born at the HUDERF are seen for their follow-up at the Erasme Hospital. In collaboration withLe service de néonatologie de l’H.U.B( Situé sur les 2 sites: Anderlecht et Laeken)  et de l’hôpital DeltaLe centre de référence pour l’IMOC ou CIRICULes centres de références pour les pathologies du spectre autistiqueLes divers centres privés proposant kinésithérapie neurologique, psychomotricité et logopédieCentre de référence en pathologie autistique, CRFNI, Centre IMOCPublished articles- Dev Med Child Neurol 2018 Apr;60(4):342-355.  doi: 10.1111/dmcn.13675.- Eur J Paediatr Neurol. 2020 Sep:28:133-141 doi: 10.1016/j.ejpn.2020.06.007. Epub 2020 Jul 16- J Pediatr 2023 Nov:262:113600. doi: 10.1016/j.jpeds.2023.113600. Epub 2023 Jul 2. FAQ Qu’est ce qu’un enfant grand prématuré Un enfant enfants né avant 32 semaines de grossesse ou pesant moins de 1,5 kg à la naissance. Qu’est-ce que la "convention des enfants nés grands prématurés C’est un programme d’évaluation du neurodéveloppement proposé par l’INAMI pour les enfants nés avant 32 semaines de grossesse ou pesant moins de 1,5 kg à la naissance. Il offre 4 bilans pour suivre leur développement.   Pourquoi mon enfant a-t-il besoin de ces bilans La prématurité expose les enfants à des risques de retard de développement moteur, cognitif et socio-émotionnel, ainsi qu’à des troubles du comportement ou des déficits sensoriels. Un suivi bien structuré vise à :Détecter précocement les troubles du développement (retard moteur, troubles de l’apprentissage, déficits sensoriels).Orienter rapidement les enfants vers des spécialistes et des prises en charge adaptées.Prévenir ou limiter les conséquences à long terme de la prématurité grâce à des interventions précoces.Accompagner les parents dans leur rôle, en identifiant et en soutenant les éventuelles difficultés relationnelles entre eux et leur enfant. À quels moments ont lieu les bilans ? - 6 mois (Bilan A) - 1 an (Bilan B) - 2,5 ans (Bilan C) - 5 ans (Bilan D)  En quoi consiste un bilan ? Vous rencontrerez des paramédicaux spécialisés comme des kinésithérapeutes, logopède et psychologues. Ils évalueront le développement moteur, cognitif et langagier de votre enfant.  Les médecins spécialistes, néonatologues, neuropédiatres évalueront également votre enfant au niveau clinique et vous remettrons et expliqueront les résultats de ces évaluations. Si nécessaire, ils vous adresseront à des thérapeutes extérieurs (logopède, kinésithérapeute, psychomotricien, psychologue), en fonction des besoins de votre enfant. Des examens complémentaires seront proposés pourront également être prescris Mon enfant se porte bien, est-ce vraiment nécessaire ? Oui. La majorité des enfants vont bien, mais certains troubles apparaissent tardivement. Grâce à ce programme, chaque étape de développement est surveillée avec attention, les paramédicaux et médecins que vous rencontrerez peuvent détecter un trouble de développement même minime ce qui va permettre d’agir rapidement si nécessaire. Les progrès de la médecine pédiatrique offrent aujourd’hui des perspectives incroyablement positives, et votre rôle en tant que parent est essentiel dans ce processus. Combien coûtent les bilans Les bilans sont presque entièrement pris en charge par votre mutuelle. Vous n’aurez que peu ou pas de frais à payer.  Que faire si un problème est détecté ? Si un suivi est nécessaire, les médecins vous orienteront vers des spécialistes (logopède, kinésithérapeute, psychologue) pour aider votre enfant à progresser. Des examens complémentaires pourront également être prescris (audiométrie de contrôle, examen en ophtalmologie, imagerie cérébrale, …) Comment serai-je informé des rendez-vous ? Vous recevrez toutes les informations sur la convention pendant le séjour de votre enfant en néonatologie. Nous vous rappellerons ensuite pour planifier les rendez-vous.  Qui participe aux bilans ? Bilan A et B : Néonatologue, kinésithérapeute, psychologue/neuropsychologue. Bilan C : Neuropédiatre, kinésithérapeute, psychologue/neuropsychologue. Bilan D : Neuropédiatre, logopède, kinésithérapeute, psychologue/neuropsychologue.  A qui puis-je poser mes questions ou demander de l’aide ? Pendant votre séjour en néonatologie, les médecins et infirmières, pourront répondre à vos questions. Notre psychologue, Mme Colin organise une réunion d’information 2x par mois (à l’Hôpital Erasme), elle sera votre point de contact. N’hésitez pas à poser vos questions ou à demander plus d’informations lors de cette rencontre.  Vous pouvez également contacter les secrétaires qui organisent les rendez-vous des suivis dans cette conventionMme Hiquet et Mme Lucaciu au 02-5556733 ou 02-5556978En tant que parent, il est normal d’être inquiet ou de se poser des questions face à l’inconnu. Sachez que ce suivi est là pour vous épauler, pas pour vous alarmer. Il s’agit d’un accompagnement bienveillant et personnalisé, destiné à garantir le meilleur avenir possible à votre enfant.