Description
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“Playground of dreams – life of dreams for every child” is an event organized by ZLRBP “My Rare World” for the third time.
The municipality of Prilep with its political leadership provides great support to people with rare diseases and their families. It is positive and especially gratifying that schools across the city recognize the month of rare diseases and dedicate part of their teaching to the education of children. It is positive that people are more accepting of diversity. But it is little.
Joining the rare disease community on a global level in commemoration of February 29 – International Rare Disease Day and this year through play, we are introduced to diversity from a young age in order to accept it.What characterizes the month of February is the commitment to draw the attention of health workers, social workers, but also to the authorities for creating policies that will make life easier for people living with a rare disease and their families.I am happy to say that the initiative for an inclusive playground in Prilep, started 3 years ago, is already becoming a reality. The beautiful park “Mound of the Undefeated” in Prilep is getting an inclusive outdoor children’s playground.
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This year whit this event we will be sending out an appeal for needs in the city and at the state level for:
💜👉The need for quality healthcare without corruption and scandals like the one that rocked the country with the case of the Institute of Oncology where the therapy for the sick was sold to others (patients from neighboring countries) while the cancer patients were given saline solution.
🔴Let’s not forget that 1 out of 5 newly diagnosed cancers is rare❗️
🩵👉The need for family caregiver status, but also professional assistants and caregivers for every family that needs it.
🔴 To avoid the risk of financial insecurity for people with a rare disease and their families. Care for them with a mutual burden on women and men when it comes to a child with a rare disease.
💚👉It is important to have a functional registry of rare diseases, for every patient to have a code according to @Orphanet in their medical documentation.
🔴Registry and coding can only help, to network information about a particular disease as well as the possibility of connecting patients and tracking new drugs and treatment.
🩷👉What we will point out for the city this February 29 is once again a playground – a closed facility in the city for training, for physical and physical activity of people with rare diseases and disabilities in addition to other children.
🔴Only in this way will we have true inclusion and, of course, the opportunity to win a champion at the Special Olympics.
💙👉Granting of scholarships to children with rare diseases at the municipal level.