Press from 29.02.2012 – Rare disease day – press conference
Daily newspapers
http://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 available
National televisions
http://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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Dear collaborators,
The Association of citizens for rare diseases “Life With Challenges”, invites you to the “First CEI Conference for building regional network of organizations for Rare Diseases”, on 23rd – 24th of March, 2014 in Skopje, R. Macedonia.
First CEI Conference for building regional network of organizations for Rare Diseases is a project that will contribute
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Dear members and supporters,
Life With Challenges is already planning the Rare Disease Day, 28th of February, 2014.
On 28th of February, organize a press conference for media - discussion with patients/families/doctors/ health institutions under the motto of the Rare Disease Day 2014 - let’s Join Together for Better Care!, as we are in preparation of the National Strategy
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