Life With Challenges, HAE Macedonia & HEMOLOGAssociation of citizens for rare diseases "Life With Challenges“ together with the association for Hereditary Angioedema - HAE Macedonia and the association for hemophilia HEMOLOG , will join the Skopje Marathon with a group running under the motto Running for a better life.Link to Skopje Marathon page - http://www.skopskimaraton.com.mk/index.htmlLink for participation in the marathon - http://www.skopskimaraton.com.mk/prijavaonline.htmlNote:
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Rare Disease Day- Life with a Rare Disease: Day by Day, Hand in HandRespected,On the occasion of the World Day of Rare Diseases the Association of Citizens with Rare Disease “Life with Challenges”, this time with joint forces of 12 organisations from the National Alliance for Rare Disease in Macedonia (NARDM) organized and event to
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Press ReleaseRare Disease Day28th of February, 2013thThe Association of citizens for rare diseases “Life With Challenges” marked the Rare Disease Day, 28th of February and with that it started the campaign for raising public awareness for rare diseases in Macedonia.This year, except the patients and families that cope with Gaucher, Phenylketonuria, and Alagille Syndrome, towards
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„HAE Macedonia“ is a patient association for Hereditary Angioedema, and it is founded in 2009. In Macedonia there are around 10 patients diagnosed with this disease, and together they try to cope with the physical and psychical consequences. It is hard to be a parent but it is even more difficult when your child has
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ANNUAL REPORT– 2012Association of citizens for rare diseases LIFE WITH CHALLENGES - BitolaThe Association of citizens for rare diseases LIFE WITH CHALLENGES - Bitola is founded by patients and parents that face life with Gaucher disease in the year 2009. Gaucher is a disease that comes from lack of enzyme in the organism and there are problems because
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On 28th February we will organize a media club/round table with journalists, representatives from the rare disease association “Life With Challenges”, doctor and representatives from the Health Institutions in Macedonia. The association will present its goals and explain the problems/issues of the patients with rare diseases. Further in an interactive discussion the doctors will answer
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