The cfull opening of the diagnostic tests and of medical treatments necessary for people with minority diseases of the principality -also when they have to be done outside of Andorra- is the main demand of theAssociation of Minority Diseases of Andorra (AMMA). The new president of the entity, Maria Feixas, tells the Diari that they are asking that the CASS assumes 100% of these expenses and that procedures and authorizations be expedited. The aim is to facilitate access to the care that those affected need and to prevent them administrative procedures become one added difficulty for families. Feixas places this demand among the priorities of the new stage of the association, which wants to give continuity to the work of the previous boards and strengthen the projects already started. AMMA had held meetings with the CASS to expose the administrative difficulties that some patients face, especially in cases that require specialized care abroad. The president considers it necessary to continue making progress in simplifying care circuits and in better coordination between the organizations involved. “The intention is to make the management related to health care more accessible and for those affected to have an adequate response to their medical needs“, he assures.
“We are committed to pooling efforts, taking advantage of resources and improving accessibility”
Another claim is to create a national registry of minority diseases. AMMA he raised this need again in a recent meeting with the general trustee and deputy general trustee, having previously transferred it to the Ministry of Health. According to Feixas, having this instrument would make it possible to better understand the reality of the group in the country, identify the needs of those affected and plan more precisely the health and social resources. theentity recognize that putting it in motion entails technical and administrative difficultiesbut considers it essential to continue making progress. The register would also contribute to having a more complete view of the needs of people who live with these pathologies in the principality
“Families must be prevented from having to face the search for information and support alone”
Another objective is to strengthen the support of patients after diagnosis. The association considers necessary to establish mechanisms so that the people affected and their families know the health, social and professional resources available in the principality In this sense, it proposes to facilitate referrals from the SAS towards specialized services and entities like AMMA. This coordination would make it possible to guide patients from the first moment and facilitate their access to existing resources. For Feixas, it is important that institutions and professionals work together to “prevent families from having to face the search for information and support alone”.
The approach ofAMMA it involves increasing collaboration with administrations, health organizations, professionals and other entities in the country. Bets for “join efforts, take advantage of existing resources and contribute to improving their accessibility and coordination“. The new board wants to consolidate the work of raising awareness and defending the rights of the affected people, as well as maintaining support for the families. The association believes that joint work with the institutions is essential to advance the demands of the group and achieve improvements in the care they receive.
Looking ahead to 2027, the entity has as a aim to consolidate these initiatives and expand the network of partners and collaborators. Among the aspects he wants to continue addressing are family and work reconciliation and access to specialized resources. The president defends that awareness-raising actions must be accompanied by measures that have a direct impact on the daily lives of those affected. For this reason, it claims the need to “transform this visibility into real improvements”, through dialogue and cooperation with the country’s institutions and professionals.
THEATER AND LITERATURE ACTIVITIES TO RAISE AWARENESS
At the same time, the association continues to promote cultural initiatives to raise public awareness of the reality of the people affected. The Saturday November 14at 18 hourswill represent theplay Invisible in Perecaus, a Canillowith the aim of giving visibility to the group. At the same time, the organization promotes the story El secret dels ADMITTEDa proposal aimed especially at the little ones that seeks to foster empathy, respect for diversity and inclusion from childhood. The two initiatives are part of the awareness work ofAMMA.
