The Lviv City Territorial Community has a social protection program for children suffering from rare (orphan) diseases. According to this program, 44 families raising seriously ill children receive monthly financial assistance of UAH 10,000. Last year, about 5.2 million hryvnias were allocated from the city budget for these payments.
The program applies to children under the age of 18. This payout is earmarked. After all, the funds can only be used to provide specialized nutrition for children with a rare diagnosis. Such food is extremely valuable. This program has been in effect on the territory of the Lviv community since 2021.
To receive social benefits, the father, mother (legal representative) of the child/children submits the following documents to the social protection department of the social protection department of the humanitarian policy department at the place of registration of the child/children:
– application for receiving social benefits;
– a copy of the passport (completed pages);
– a copy of the identification number (except for persons who, due to their religious beliefs, refused to accept the registration number of the taxpayer’s registration card and notified the relevant body of the state tax service about it and have a mark in their passport);
– account number at the bank, to which social payments will be made;
– a copy of the birth certificate(s) of the child(ren);
– a copy of the decision of the relevant commission of the regional administration on the need to provide (continue providing) appropriate specialized food products;
– certificate of the child’s illness for severe perinatal damage to the nervous system, severe congenital malformation, rare orphan disease, oncological, oncohematological disease, cerebral palsy, severe mental disorder, type I diabetes (insulin-dependent), acute or chronic stage IV kidney disease, that the child received a serious injury, needs an organ transplant, needs palliative care, issued by the medical advisory board of the medical and preventive institution in the manner and in the form established by the Ministry of Health (hereinafter referred to as the child’s illness certificate).
Before the Ministry of Health establishes a form of a certificate about a child’s illness, a certificate from a medical advisory commission of an arbitrary form is submitted about the presence of a rare orphan disease in a child, indicating the child’s last name, first name, patronymic, date of birth, indicating the code according to the International Statistical Classification of Diseases ICD-10 , the date of issue and the validity period of the certificate, which is signed by the chairman and members of the medical advisory commission and certified by the round seal of the medical institution (institution); a certificate of the child’s place of registration (if this information is not available in the register of the Lviv City Territorial Community).
certificate
Orphan diseases are congenital or acquired diseases that occur extremely rarely: less than one case per 2,000 of the country’s population. 80% of these diseases are genetically determined. They not only have a severe and chronic course, but are also accompanied by a decrease in the quality and shortening of the life expectancy of patients. Such people usually require expensive, continuous and lifelong treatment.
Most orphan diseases are diagnosed at an early age, in 35% of cases they cause the death of children under one year old, in 10% of children under the age of 5 years, in 12% – between the ages of 5 and 15 years.