Dear members and supporters,From 5th to 7th of April, in Sarajevo, Bosnia and Herzegovina, there will be a Gaucher meeting organized by the Balkan Associations from Slovenia, Macedonia, Bosnia and Herzegovina and Serbia.The goal of the meeting is for patients, parents, doctors and nurses to talk together about life with Gaucher and how to improve
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The Association of Citizens for Rare diseases "Life With Challenges" from Bitola is a winner of the PAL (Patient Advocacy Leadership). As winner of this award are 8 more organization from the world.The PAL Award recognizes patient advocacy organizations for extraordinary work and innovation in helping to raise awareness of lysosomal storage disorders (LSDs), a
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Press from 29.02.2012 – Rare disease day – press conferenceDaily newspapershttp://www.dnevnik.com.mk/default.asp?ItemID=6A2E3A7D78373743942077317D4FDEDBhttp://www.denesen.mk/broj66/http://vecer.com.mk/?ItemID=CF9BD888BBEDEE4AAE6F86A85D53EFA4http://www.dnevnik.com.mk/default.asp?ItemID=099CEDCB5472FA47A4ABE965ED408DA2Focus – on line link not availableNational televisionshttp://kanal5.com.mk/default.aspx?mId=37&egId=13&eventId=87829http://vesti.alfa.mk/default.aspx?mId=36&egId=6&eventId=46777News at 18.30h on Telma- http://telma.com.mk/index.php?task=content&cat=1&rub=6&item=14908Sitel – News at 15.00h- on line link not availableSitel – morning show – 8.30h – on line link not availableAlfa – portik – tv show – 10.00-12.00 h. – on line link
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The government is ignoring 20 patients with rare diseasesWith the budget cuts, the hope of the patients is gone!A 12 year old girl with Gaucher will have to be operated if the Ministry of health does not make an intervene import of the needed medicine. The budget for the program with rare diseases has been
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Dear friends,Association of citizens for rare diseases "Life With Challenges“, will join the Skopje Marathon, with a group running under the motto - Running for a better life.Link to Skopje Marathon page - http://skopskimaraton.com.mk/ Link for participation in the marathon - http://skopskimaraton.com.mk/prijavuvanje/5km/Note: If you are applying to participate in our group for rare diseases, in the part where it says
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International Gaucher Day25th of July (Friday) 2014, Skopje R. Macedonia10:30 – 11:30 h.Dear members and supporters,The Association of citizens for rare diseases LIFE WITH CHALLENGES - Bitola, will organize an event for 26th of July, the International Gaucher Day, for the first time this year, as it is launched by the European Gaucher Alliance. The 26th of July
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