Documentary on rare diseases "Day by Day" is a project by Croatian Association for Rare Diseases, the umbrella organization for rare diseases in Croatia. The film was created in collaboration with the Croatian Film Association.
Given that rare diseases are those that occur in less than 5 individuals per 10,000 people, the public and even medical circles have very little knowledge about them. Therefore, this concept of a documentary about rare diseases was developed in order to lift the consciousness of the public and all persons who are involved in providing care to those suffering from rare diseases that those patients are not "just any people" and that they need help to get away from the margins of society. Sometimes it is just a little bit of good will that is needed to keep those people involved in the daily life of the community and live quality lives. In addition to social issues, the film tackles the issues of access to adequate medical care and expensive treatments and the question of where the patient is in the health care system.
The film presents stories of the real life of people affected by rare diseases and their families and shows all the problems they face in everyday life. Although each rare disease is distinct, problems that arise from their rarity and unfamiliarity are similar with all patients. For this reason, the film, through the stories of the patients, gives an overview of all significant common problems connected to rare diseases.
In addition to stories of patients, the film provides the opinions of local and foreign experts who encounter rare diseases in their work - doctors, representatives of pharmaceutical companies, representatives of institutions...
Sinisa Varga, Croatian Minister of Health also appears in the film and speaks about the current situation in the field of rare diseases in Croatia.
Also, as examples of good practice, the film shows foreign specialized centers for rare diseases - Zeepreventorium DeHaan in Belgium and NoRo center in Romania.
Contact information
Croatian Association for Rare Diseases
Ivanićgradska 38, 10000 Zagreb
Tel: 01/2441-393
Faks: 01/5534-905
E-mail: rijetke.bolesti@gmail.com
Web: www.rijetke-bolesti.hr
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