contador gratuito FECAMM-Des de FECAMM col·laborem amb
Menu Responsive

FECAMM collaborates with

RARE DISEASES ADVISORY COMMITTEE (COMISSIÓ ASSESSORA EN MALALTIES MINORITÀRIES (CAMM)). DEPARTAMENT DE SALUT DE LA GENERALITAT DE CATALUNYA


The objective of the committee is to help achieve better medical attention. The committee works with:

· Rare diseases Clinical Excellence Units in Catalonia.
· The map on the CatSalut website that shows the expert clinical laboratories that diagnose rare diseases.
· Extension of the neonatal selection process programme in Catalonia.
· Project of Registration of rare diseases in Catalonia.

CATSALUT’S ADVISORY BOARD FOR HIGHLY COMPLEX PHARMACOLOGICAL TREATMENTS (CONSELL ASSESSOR DE TRACTAMENTS FARMACOLÒGICS D’ALTA COMPLEXITAT (CATFAC))

CATFAC is an advisory board within CatSalut that deals with highly complex pharmacological treatments. This advisory board is one of the management measures planned in CatSalut’s pharmaceutical provision strategic plan. It was created with the intention to incorporate highly complex pharmaceutical treatments equitably, effectively, safely, and efficiently for the patients.


PATIENT ADVISORY COUNCIL (CONSELL CONSULTIU DE PACIENTS)

The Patient Advisory Council (CCPC) was created in October 2012 as a participation and advisory council of the Catalan healthcare system patients’ representatives. During its first year, CCPC made a great effort to get to know the working and needs of the patients’ entities. In September 2013, to celebrate its first anniversary, CCPC held in Barcelona its first conference. With the motto “Sharing is moving forward” it gathered patients, families, patients’ entities, and healthcare workers.

WORLD RARE DISEASE DAY MANAGEMENT COMMITTEE (COMISSIÓ GESTORA DIA MUNDIAL MALALTIES MINORITÀRIES)

The World Rare Disease Day Management Committee in Catalonia is made up of patients’ associations, Federació Catalana de Malalties Minoritàries, FEDER (Delegació de Catalunya), and Universitat Autònoma de Barcelona’s Rare Diseases Platform. The committee is responsible for organizing World Rare Disease Day.

VALL D'HEBRON'S RARE DISEASE UNIT (UNITAT DE MALALTIES MINORITÀRIES VALL D’HEBRON)

The objective of the unit is to develop a comprehensive and multidisciplinary care model for rare disease patients.

The creation of the Rare Disease Unit also aims to establish a multidisciplinary consulting space with case management and rearrangement of circuits of care.

Facilitating the formation of patient care groups according to their pathologies. At the same time, develop and boost the Central and Molecular Genetics Laboratory to help improve diagnoses.

 

RARE DISEASE PEDIATRIC INSTITUTE (INSTITUTO PEDIÁTRICO DE ENFERMEDADES RARAS). SANT JOAN DE DÉU HOSPITAL

Sant Joan de Déu Hospital, since February 20215, has had a transversal specific service: Rare Disease Pediatric Institute (IPER), created to make progress regarding knowledge and research of rare diseases, to offer comprehensive on-site care to more than 100,000 rare disease patients that are currently being treated on the Institute and to facilitate quicker diagnoses to those who suffer them and have to wait long before getting a diagnosis.