Information and guidance for those people affected by a rare disease that send us consultations. Through telephone assistance or by coming to the federations office, those affected by rare diseases and their relatives, caregivers or friends, and any interested person, will be attended and directed to experts on their consultation, such as the patients’ association of their disease. This service is free for anyone who contacts the federation.
· Guidance regarding the existing resources (associations, expert medical centres, etc.).
· Search for people affected by the same pathology or a similar pathological group.
· Mutual Help Groups (GAM).
· Psychological support (referrals).
· Encouragement of association movement.
PHYSIOTHERAPY AT HOME OR ON-SITE
A lot of rare diseases do not have a specific treatment and rely on symptomatic and/or palliative treatments. One of the most adequate techniques to palliate and delay the effects of rare diseases is physiotherapy.
FECAMM offers sessions in rehabilitation centres and sessions at home, if trips are to be avoided, to anyone who is a member of the federated associations.
These sessions are given by professionals coming form centres that collaborate with the federation. The rehabilitation centres are: ARA Psicologia, Corporación Fisiogestión, Centre Kàbala i KORPORAL. They treat patients from Barcelona and surrounding cities (Sabadell, Rubí, Mollet del Vallès, Hospitalet de Llobregat).
Through everything we do, one objective is the divulgation and promotion of knowledge regarding rare diseases both in public and private sectors. It is not about a one-time action but a continuous and dynamic effort, both in person and through social media.
Along with these services, FECAMM looks after the rights of those affected by acting as an intermediary between them and the public expert organizations. Because of this, FECAMM participates and actively collaborates with the following committees and groups.
· Rare Diseases Advisory Committee (Comissió Assessora en Malalties Minoritàries (CAMM))
· World Rare Disease Day Management Committee (Comissió Gestora Dia Mundial de Malalties Minoritàries)
· Patient Advisory Council (Consell Consultiu de Pacients de Catalunya)
Location: *Carrer cuba, número 2 (Barcelona). Hours agreed*
Telephonic assistance: Monday to Friday, from 10 a.m to 2 p.m.