FEDER Rare Disease Information and Orientation Service (SIO): building bridges to improve the lives of the patients
For two decades, the Spanish Federation of Rare Diseases (FEDER) has been giving voice to more than 3 million people who live with a rare pathology in Spain. At the present time, the association represents more than 1,200 diseases and nearly 98,000 people and, due to alliances with organizations such as EURORDIS and ALIBER, it has managed to go beyond national borders in recent years.
In 2001, FEDER launches the SIO (Rare Disease Information and Orientation Service), a hotline dedicated to provide comprehensive care ‑ at no cost ‑ that aims to improve the quality of life of people with rare diseases and their families, facilitating access to quality information, as well to welcome, support and guide the people who make the consultations.
Estrella Mayoral Rivero, who manages this service, explains its operation and objectives. "From the SIO we promote the creation and promotion of networks of patients, families and professionals and we elaborate reports for the administrations, so they know the issues affecting this community and they can improve their situation". A specialized advisory committee collaborates with the service and anyone who needs guidance on rare diseases can get in touch through a SIO technician.
To facilitate better care, the SIO coordinates with other services of the organization, as well as with other entities and organizations external to FEDER. "The service provides social and socio-health support, legal support, educational support, information to non-FEDER associations, coordination to facilitate psychological care and attention to undiagnosed cases, among others" explains Estrella. "It also identifies resources and specialists by pathology or by group".
On the other hand, the SIO has promoted the creation of the Observatory of Rare Diseases, a project that seeks to share and generate knowledge about the needs and problems of people living with a rare disease.
«From the SIO we promote visibility, the feeling of belonging to the collective against exclusion»
The objective of the service is to know the needs of the community of patients and families, make their unmet needs visible, detect legal gaps in their care or prepare reports and studies so that the relevant administrations can carry out health, educational, employment and social planning that truly responds to the particularities of rare disease patients.
During the last year, the SIO has attended 8,865 requests made by 4,518 people. The level of user satisfaction, according to the results of more than 150 surveys, is almost 93 %. Its Call Center has received 1,113 calls in 2019.
User profile and type of consultations
Most SIO users are women, usually mothers or caregivers of a person affected by a rare disease. The most common requests are those related to the demand for information about a given disease (2,249 consultations), the search for a specific association for a disease to share experiences and be able to work together to improve the personal situation (672 consultations) or the search for professionals with experience in the disease suffered by them or they children (645 consultations). Users also search for people affected by the same pathology (618 consultations) and legal advice (321 consultations).
Promoting the creation of patients’ organizations
Since its foundation, the SIO has helped to create more than 200 patient groups, associations or networks. Once the network is created, we do a follow-up every 6 months and we help them find more patients or resources of interest. If those groups are finally constituted as an association they have the possibility to join FEDER. "Whether they are part of FEDER or not, we offer them information and advice" says Estrella.
Collaboration with Share4Rare
The SIO and Share4Rare are currently working on a collaboration, which will translate into new benefits for the rare disease patient community. As Estrella comments, "We are currently working to formalize a relationship with the Share4Rare project that we believe will be beneficial for those affected, and it will fundamentally have an impact rare disease research".
It is precisely within the framework of the new Share4Rare study aimed at people without diagnosis where both initiatives will mainly collaborate.
The SIO consultation service is at your disposal through the following email: firstname.lastname@example.org