In Fuper We want to improve the quality of life of people with rare diseases . These diseases have no cure , are patients of all ages and sexes , half of these are children. Free loans psychological counseling for the patient , the caregiver and their families , with a group of doctors allies help clarify diagnoses, give them the legal tools to access health services . We motivate them to be productive and independent . We take a comprehensive and permanent support to the patient and his family.
Rare diseases are not cured and most are degenerative high degree of disability. It can occur during pregnancy , birth, childhood , and adults. 80 % is genetic . The diagnosis of these diseases is very difficult and can take 5 to 10 years. In Colombia the prevalence is 1 in 5.ooo people. It is estimated that there are 440,999 people with rare diseases in Antioquia and do not know . We are convinced that appropriate treatment and medical care and ongoing support can improve quality of life.
In Fuper we know that there is always something to do although there is no cure. We listen to the patient and their needs are identified. We help with appointments with medical specialists to clarify diagnosis, psychological appointments for him , his caregiver and family legal advice for medicines, examinations and medical care in the midst of a strong health crisis in our country. We invite you to attend workshops and lectures . We encourage them to return to being productive.
Today we have 280 patients, and we believe that at the end of the year will reach 400. Every day new cases of patients come to us. We are in an area where there is intermarriage and this makes rare diseases appear. We also know that many patients are at home waiting to die because they were told that there is nothing to do. These patients also must come and help them. Another number of patients are misdiagnosed and want to help clarify. We are convinced that there is always something to do!