In order to help patients and their family to identify different structures, professionals and associations of abdominal and thoracic rare disease network in France, FIMATHO has created two cartographies:
- « FIMATHO rare disease network » map which enables to identify:
- rare disease reference and competence centres
- regional’s points of contact for patient associations
- professionals with a DIU certificate in "Oral feeding difficulties in children"
- authorized centres for parenteral nutrition at home
- Lodging map listing housing solutions for adult patients and parents or those accompanying the hospitalised patients, located near the network’s reference and knowledge centres:
- Family guest houses (hospital guest houses, parents’ houses, foundations, etc.)
- Other lodging options near hospitals (hotels, hostels, religious institutions, etc.)
- Host families who volunteer to lodge the parents of hospitalised children, families and/or adult patients (inventory in progress).
The European Reference Network on Rare Inherited and Congenital Anomalies (ERNICA) has developed an online map on its website in order that facilitate identification of specialised centres across Europe for pediatric patients with intestinal failure
- ERNICA map enables identification of european centres specialised in care for pediatric patients with full parenteral nutrition which respect these criterions :
- centre has a maximum of 10 patients with full parenteral nutrition
- centre can make a central venous catheter insertion