Republic of Macedonia HAE Macedonia
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1 Republic of Macedonia HAE Macedonia Natasa Angjeleska PR and advocacy
2 Republic of Macedonia Location: Southeastern Europe Geographic coordinates: N, E Area: total: 25,713 sq km land: 25,433 sq km water: 280 sq km Population: 2,096,015 (July 2015 est.) HAE patients: 16 HAE prevalence: 60-70
3 Management of HAE: Diagnosis and doctors Limited number of medical staff/ physicians, nurses, ER knowledgeable about HAE HAE Macedonia organized a three-month educational HAE Caravan in 7 towns in Macedonia in 2014; HAE Macedonia took crucial part into organizing Rare Disease Lectures in 2016, targeting doctors and students of medicine; HAE Macedonia organizes types of activities about raising awareness among general public; HAE Macedonia participates in a lot of media covered events, HAE Macedonia s representatives are guests in popular TV and radio shows to educate and raise awareness. Specialist dermatologist and pediatrician immunologists are the two reference physicians in Macedonia; If patients are referred to Dermatology Hospital or Children Hospital in Skopje Clinic, they would be tested for HAE; Number of rare diseases are included in the Government Rare Disease Program that has fund for supplying medications for patients in respected hospitals; Macedonia
4 Management of HAE: Medication and treating attacks How is HAE treated in Macedonia? No HAE medications have been licensed for usage No reimbursement options if we buy medicines HAE medicines are available through Program for Rare Diseases Ruconest and Berinert are available treatments for adult patients, administered at Dermatology Clinic in Skopje Berinert is available for children patients, administered at Children hospital, in some occasions available for home treatments as well Macedonia
5 Management of HAE: Medication and treating attacks How is HAE treated in Macedonia? There are rigid restrictions for treatments: Adult patients only have 6-8 vials per year! Children patients can only have 2 vials per month, total 24 per year Rare diseases are not priority question in the Government and relevant Ministry of Health BUT public pressure as well as a lot of debates and activities raised by National Alliance of Rare Diseases resulted in securing funding for rare diseases treatment through excise taxes from cigarettes! Limited options for treatments and improved life for rare disease patients Macedonia
6 Management of HAE: An emergency situation What happens in an emergency situation? HAE is usually not recognized by doctors in the Emergency Room! Adult patients who have diagnosis call and go to Dermatology hospital in Skopje to receive treatment with Ruconest and/or Berinert; Some patients live outside the capital and have to travel to Skopje in case of attack! There are situations in which the hospital doesn t have vials, and patients are left without treatment! Children patients who have diagnosis call and go to Children hospital in Skopje to receive treatment with Berinert; In some situations, this hospital is giving Berinert for hometreatment by parents, after the infusion training was delivered by nurses!
7 Patients in Macedonia are joined in patient association HAE Macedonia HAE Support We are member of HAEi umbrella association from 2012 HAE Macedonia has 11 members There are 16 HAE patients in Macedonia, 2 are children, 5 are newly diagnosed patients HAE Macedonia implements numerous activities that involve Macedonia
8 ACTIVITIES AND PR: Ø We tend to organize activities with low cost (or no cost) but on public spaces and with huge media coverage 8
9 We participate in TV and radio debate programs, our life stories, information about HAE and HAE Macedonia activities are announced in daily media, on-line media, as well as in weekly magazines
10 We organize educational activities for medical personnel We were one of the initiators in setting National Alliance for Rare Diseases and managed in lobbying for improved Rare Disease Program through which therapy for HAE patients was secured starting from September 2015
11 Future of HAE Plans/dreams for HAE in Macedonia: Continuous and modern therapy options available for all HAE patients; Home treatment available for all patients; Involvement of bigger number of doctors knowledgeable about HAE; Training and education of additional doctors about HAE, support them in participation in international conferences, visits to other countries and HAE Centers; Participation in international meetings and involvement in lobbying activities with pharmaceutical companies; Supporting and participation in research activities with doctors and researchers; Enhanced regional cooperation and joint activities: we will organize HAEi Balkan countries meeting for patients and doctors in June 17-19, 2016 in Skopje.
12 hae day :-) hae day :-) is an opportunity for us to confirm that the large number of patients, caregivers, relatives, friends and supporters are with us in the struggle for improved life conditions and quality of life!
13 Stay in touch Organization name: HAE Macedonia Organization contact person: Natasha Jovanovska Popovska, president Organization contact details: Facebook page:
14 Macedonia
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