Ден на ретки болести 2014
Patient Stories 2013
Приказни на пациенти 2013
Mediumi example
An example for media
Program for rare diseases in Macedonia
PROGRAM FOR TREATMENT OF RARE DISEASES FOR 2009 IN R. MACEDONIA Rare or orphan diseases are diseases who appear in 5 cases in 100 000 population. The small number of cases with rare diseases is a limited circumstance for the pharmaceutical industry to undertake further research for these diseases. Although from every rare disease for […]
Report 2013 – Life With Challenges
Respected members, colleagues and supporters, Our Report for 2013 is available in a form of presentation at the following links: http://prezi.com/hvjgsgvnvzpo/life-with-challenges-annual-report-2013/?utm_campaign=share&utm_medium=copy http://prezi.com/j4ksztnlfvax/life-with-challenges-cooperation-2013/?utm_campaign=share&utm_medium=copy We wish you happy holidays, Executive Board of Life With Challenges
Child protection rights
Financial help from the Ministry of Labor and social policy http://www.mtsp.gov.mk/?ItemID=35627DB6D7CF734498CCF9743B34B99FChild with specific needs and disabilities regarding this law is a child with: – difficult, more difficult, the most difficult physical disabilities; – moderate, difficult or deep mental disability; – most difficult forms of chronic illness; – very high degree of impaired vision, hearing or […]
Program for rare diseases of the Ministry of Health
The first program for rare diseases at the Ministry of health is from the year 2009 and it included 3 patients with MPS 2 – Hunter syndrome Програма за ретки болести 2009 година – Program for 2009 in Macedonian language There were no further changes until 2015 . Program for 2012 – Програма за лекување на […]
European Gaucher Alliance Membership meeting, 28.06.-02.07.2016
The EGA is delighted to announce that during its Biennial General Meeting in Zaragoza on 29 June, its members expressed their wish to amend the founding constitution by abolishing the differentiation between full and associate membership. With a voting result of 69% in favour of providing full rights to non-European member associations, the majority of […]
Organizing FOP day in Valandovo, Macedonia, 3rd December, 2016
On 3rd of December, our member Viktorija Penovska with the help of her school and her friends and family organized an event in her school focusing on the importance on accepting disability and the importance of social inclusion.