Patient Associations

Archive L'associazione come risorsaENG

The numerous Associations of Patients Living with Rare Diseases play a decisive role for patients and their families.
The basic principle of the Associations is reciprocal assistance: this enables the development and exchange of information and education for improved access to diagnosis, therapy, rights and patient integration.

Rare diseases are those illnesses that occur in a limited number of persons within a population: less than 1 case in 2000 people. This is an apparently small number yet, if we take into consideration that there are at least 6000 different rare diseases this means that at least 6% of the world population suffers from a rare pathology. The numerous and different symptoms faced when living with rare disease make the related problems "appear" to be illness specific.

The Associations of patients have succeeded in evidencing how each rare disease is only "apparently" unique in the "Needs" it creates and how, instead, all rare diseases have the same problems related to social-medical assistance, healthcare and therapy. Some of the common problems are:

- Difficulty and delay in the diagnosis;
- Difficulty finding updated and relevant information about one’s own disease;
- Lack of available therapy for rare diseases;
- Difficulty finding information about specialized centres;
- The rarity of some pathologies often makes the patient and his/her family isolated and in need of a network of assistance;
- Disparity in services among Nations and even among Regions;
- Difficulty obtaining sufficient information about administrative procedures to be undertaken.

The Associations have tried to fulfil these needs by taking on institutional roles as well.

The aim of this web site is not only to supply a list of Associations of patients living with rare diseases, but it is also to "give a voice" to these Associations and to continue together with them in the active collaboration that is already taking place.