On January 17th 2020, a meeting “Christmas debates” was organized in the premises of the CF “Sister Dalila” organized by the movement of the orphan community “Orphan Bell” with the participation of patients, representatives of patient organizations, local and regional authorities, doctors, public activists.
The current state of rare (orphan) diseases (CDKL5, tuberous sclerosis, Duchenne/Becker myopathy, pulmonary hypertension, SMA, mucopolysacharidosis, neurofibromatosis) was voiced first-hand from patients, their representatives, doctors, public activists, including needs:
- a single register of orphan patients;
- access to early diagnosis, to prevent the progression of the disease and timely start of treatment;
- registration of medicines;
- access to free provision of vital medicines, medical equipment, specialized nutrition;
- daily rehabilitation;
- provision of technical and other rehabilitation means adapted for Orphan patients;
- A separate office with a multidisciplinary team of doctors for advice of orphan patients on the basis of an existing medical institution.
Representatives of the Health Department of Lviv Regional State Administration, Health Department of Lviv City Council, Department of Social Protection of the Population of Lviv Regional State Administration took an active part in the discussion, voiced their position on the current state of budget support of patients with rare diseases.
Also, there was discussed the importance of pre- and after transplant support of patients, receiving the patient’s recommended immunosuppressive therapy to prevent organ rejection.
According to the results of the discussion the movement of the orphan community “Orphan Bell” prepared an appeal to Lviv Regional State Administration, Lviv Regional Council, Lviv City Council with specific proposals for execution, the implementation of which will improve the situation of orphan patients in Lviv region.
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#легеневагіпертензія #мукополісахаридоз #туберознийсклероз #міопатіяДюшеннаБеккера #хворобаГоше #новинильвова #новиниУкраїни