The parents of children and young people with a chronic or long-term disease may find it useful to know about and contact a patients’ association in order to get information and mutual support provided through contact with other parents.
The patient associations work to improve the quality of life of patients and their relatives through numerous activities, which include:
- Providing information about the disease and its treatments
- Providing social and psychological support to patients and relatives
- Organising training or recreational activities
- Promoting research and investigation
- Performing information dissemination and social awareness-raising actions
We help you to find people in the same situation as you
Yes. The SJD Barcelona Children's Hospital helps to ensure that bodies can attend to families in the Associations Space offices.
Associations that you can find regularly:
- Catalan Association of Friends and Families of Child Cancer Patients (AFANOC)
- Catalan Association for the Assistance of those affected by Child Heart Diseases (AACIC)
- Catalan Diabetics' Association (ADC)
- The Hospital’s Group for Parents of Premature Children
- PKU and other Metabolic Disorders (PKU ATM) Association (in the food bank)
In this directory of associations (in Spanish) you can find the contact information for associations and other organisations which conduct their activities in Catalonia or the rest of Spain, and which are related to paediatric diseases.
Patients suffering from rare diseases can experience significant isolation if there is no organisation available in which they can get to know other people in the same situation.
Although there are many rare diseases for which there is no group of patients in the country, there are certain resources for helping patients with very rare diseases in finding others. If you have not been able to find any association or group of patients, or if you need further information, do not hesitate to contact us.
Do you belong to a patient association?
At SJD Barcelona Children's Hospital, we support patient associations so that you can go about your activities more easily.