Our organization is founded with the help and support by the National Alliance of people with rare diseases of Bulgaria. The first meeting of families and doctors connected to rare diseases in Macedonia was organized by Bulgaria in Ohrid, Macedonia, in June, 2009.
Since than the patients in Macedonia decided to form their own organization and fight for their rights. This is how Life With Challenges was born.
In the next 3 years we were gathering members and learning how to manage and grow into a strong patient organization.
- Sharing knowledge in patient advocacy.
- Sharing tools and best practices with patient organizations.
- Learning how other organizations in the world accomplish their goals.
- Getting support in policy development.
- Getting support and new ideas for activities about raising public and institutional awareness about the problems and challenges of the patients and families.
- Access to workshops, meetings, seminars and training on subjects important for development of strong patient advocates.
- Access to new information of research and development of new medicines, new policies and new ways to help and support patients
Meetings for development of regional and international cooperation:
Second regional meeting of Gaucher patients and first regional meeting for lysosomal diseases Sarajevo, Bosnia and Herzegovina, 5-7 April, 2013
Second Balkan Conference for rare diseases – “Better communication – better treatment“, 20 – 22 April, 2013, Sofia, Bulgaria
EURORDIS Membership Meeting, May, 2013, Dubrovnik, Croatia
Patient Meeting Bulgaria – Macedonia, Skopje, 7 September, 2013
Congress for rare diseases in South-East Europe, Skopje, Macedonia, 16 November, 2013
NORBS – National Plan Conference, Belgrade, Serbia, 5-7 December, 2013
DITA Task Force Meeting (Drug Information, Transparency and Access), London, UK, 8-10 December, 2013
EUPATI – European patients academy on therapeutic innovation – 2014 – 2015
European Federation of Neurological Associations training course on Pharmaceutical policy, pricing and reimbursement, at London Schools of Economics and political science, 13th to 14th of May, 2014, London, UK
EUnetHTA Training course and conference – HTA 2.0 Europe, Teaming up for value, 29th to 31st of October, 2014, Rome, Italy
EURORDIS Membership meeting, 8th of May, 2014, Berlin, Germany
Bulgaria – Macedonia Meeting, Kustendil, Bulgaria, 1-3 May, 2015
Partners for Progress: Patient advocacy in a changing environment, Lisbon, Portugal, 30 June – 1 July, 2015
The National Alliance for Rare Diseases of R. Macedonia – NARDM
12 organizations are founders of this alliance, in 2014 and we are open to new members that want to join our efforts in providing better quality of life for families that face life with a rare disease.
- Our vision is providing best possible quality of life for people that face life with a rare disease.
- Our mission is promoting the principles of equality, solidarity, non- discrimination, information and protection of rights of people with rare diseases in R. Macedonia and internationally.
- Today NARDM has 13 organizations as members: Association of citizens for rare diseases LIFE WITH CHALLENGES, Bleeding disorder society of R. Macedonia – HEMOLOG, Association for Hereditary Angioedema – HAE Macedonia, Association for rare neurological diseases in children – Kokicnija, Association for hemophilia, Non Government Organization for Rheumatism and Arthritis – NORA, Association for Wilson Disease, Association for Emancipation, Solidarity and Equality of Women – ESE, Association for Pulmonary Hypertension – MOMENT PLUS, Association of citizens for Down Syndrome – Trisomy 21, Association for people with dysfunction, handicap, rare diseases and special needs – Dajte ni krilja, Macedonian Association for Chron and Ulcerative Colitis – MAKUK, Association of citizens for motivation and happier, more productive life of people with physical and mental disabilities – Nova Iskra.
EURORDIS Membership Meeting, Madrid, Spain, 29 – 30 May, 2015