Even though the signs and symptoms of rare diseases are very different, the patients often face similar challenges: delayed and incorrect diagnoses, lack of information, poor coordination between different institutions, lack of appropriate treatment and care, complex administrative procedures, isolation and lack of psychological support. In order to address these challenges, ALAN offers these patients administrative, social and psychological support, specifically tailored to the individual’s needs. All of the services provided by ALAN’s consultation service are free of charge. Any person directly or indirectly affected by a rare disease can benefit from these consultations, whether they are a member of ALAN or not.
Organisation & expertise
A team of case managers (“référents de parcours de santé“) is in charge of the socio-therapeutic aid and psychological counselling. The case mangers hold a university degree in a paramedical or social field of study, supplemented by numerous continuing education courses related to rare diseases. They support the patients and their families all along the different stages of the evolution of their disease. Currently, the consultation team is composed of psychologists and social workers.
Psychological counselling is offered to the patients, as well as their loved ones. They often experience anger, anxiety or stress related to the delay in diagnosis, the diagnosis itself, the prognosis, the progressive loss of autonomy, the social isolation or financial burden. Some people risk developing depression or other mental health issues. Together with the multidisciplinary team and the psycho-social network, ALAN’s psychologists offer professional psychological counselling that is tailored to each individual’s needs. The psychologists help and empower patients to adapt, (re)construct and redirect their life plans following the diagnosis.
The social workers’ expertise lies primarily in dealing with socio-administrative procedures, providing information and coordinating between different institutions. They inform patients about their disease, their rights, specialised doctors, available aid, relevant networks and reference centres. They take charge of the coordination between the patient and the medical, social, professional and school environment, so that everyone within the patient’s network works hand in hand. The role as coordinator and information provider is often shared by ALAN’s social workers and psychologists.
These two professions bring their specific expertise and point of view to jointly support the patients in their life plans. By combining social and psychological aid, ALAN is able to provide more efficient and targeted support with the ultimate goal of giving patients more autonomy and improving their quality of life.
Areas of support
ALAN’s social workers and psychologists work with the patients and their families to support them in the following main six domains: