Respected members, colleagues and supporters,
Our Report for 2013 is available in a form of presentation at the following links:
We wish you happy holidays,
Executive Board of Life With Challenges
Vesna Aleksovska, president of Life With Challenges, this year in October, become a member of the DITA Task Force (Drug Information, Transparency and Access) – EURORDIS.
The first meeting of the group was on 9th of December, 2013, in London.
Life With Challenges participated at the First National Conference for rare diseases in Serbia, Belgrade, 5-7 December, 2013 in the organization of the National Organization for Rare Diseases Serbia (NORDS). Vesna Aleksovska, was leading one of the the workshops for Strengthening Patient Leadership together with Vlasta Zmazek (Croatian Alliance fr Rare Diseases), Jelena Milosevik (NORDS), Mira Grujic Brojcin (Association for Epidemolysis Bullossa, DEBRA, Croatia).
The Association of Citizens for Rare Diseases Life With Challenges, participated in the International Summit of Health Grouper, on 7th of December, 2013. We discussed the question on rare disease treatment with the national and international present experts and we accomplished a short meeting with the Minister of Health Mr. Nikola Todorov, with aim to continue this conversation in making steps to improve quality of life of patients and families that face life with rare diseases.
At the Macedonian Academy of Science and Art on 16th of November, 2013, Life With Challenges participated in the Congress for Rare Diseases of South-East Europe, in organisation of the Research Center for genetic engineering and biotechnology “G.D. Efremov”. Patrons of the congress were the European Academy of pediatrics, MASA and the Doctor Chamber of Macedonia.
At the congress there were representatives from Life With Challenges to present the patient side of rare diseases.
In Macedonia officially in Life With Challenges there are around 60 patients with more than 15 different rare diseases. Only 3 patients are included in the rare disease program at the Ministry of Health for now. As an association we are requiring more patients to be included in the program for rare diseases and it is possible for some of the patients to be treated by the Health Insurance Fund, the Ministry of Labor and Social Policy and the Ministry of Health.
– This is a step forward for rare diseases, but more steps are needed. There are a lot of patients without treatment who are left on their own to deal with their lives, stated Vesna Aleksovska, president of Life With Challenges.
In pediatrics, according to the doctors, except infections, all other rare diseases are rare. Croatia is providing therapy for all patients. In the frames of the Health Insurance Fund in Croatia there is a special fund just for financing orphan drugs.
– More and more drugs are entering that fund. There are issues and there are needs for reforming the system. In Croatia the treatment for all patients is covered by the state, stated D-r Vukashin Andrik from Croatia.
In the world there are 350 million people suffering from 8000 different rare diseases. Rare diseases are public health priority according to the World Health Organization and the European Commission.
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 for rare diseases.
Also we will have sponsors/donors/supporters/volunteer event as we are celebrating 5 years of the existence of the organization. We will award certificates to all people/companies/organizations/institutions that supported us through the years.
We will have a cocktail afterwards – participants gathering to discuss future improvements in treatment and care in order to improve quality of life, and to share experience on what does it mean to live with a rare disease.
Day before rare disease day (27th of February) we will organize education events for students from the Medicine and Pharmacy Faculty with cooperation with the University Children Clinic Skopje.
We are also organizing exhibition On 28th of february: One day of my life with a rare disease.
If you have other suggestions or ideas for Rare Disease Day, we are here to review them.
Regarding Rare Disease Day events we are also open for cooperation with other Macedonian Organizations that want to contribute and participate in Rare Disease Day Activities – Together we are stronger – Let’s join together for better care!
Step 1: If you are an organization that represents some specific rare disease you are welcome to be our partner in marking the Rare Disease Day
Step 2: If you are organization or institution that is not working specifically in the area of rare diseases you are welcome to join as our supporter.
Step 3: If you are individual you can volunteer and support our activities
Step 4: Contact us and send us information about how you want to participate in the Rare Disease Day activities: zivotsopredizvici@gmail.com, info@challenges.mk
Step 5: Be a part of Rare Disease Day 2014 – Let’s Join Together for Better Care!
Regarding the exhibition, we need your help and cooperation.
Step 1: Do you want to participate in the exhibition?
Step 2: Do you have a photograph with a good resolution that you want to share? (If not, please call us and we will arrange a photographer, or make photo – the holidays are coming and it is a great opportunity for family pictures and sport activities)
Step 3: Write a short story about your life with a rare disease as a patient or as a parent, friend, spouse … or write a motto that gives you courage to face life with a rare diseases ..
Step 4: Contact us and send us a picture and a story: zivotsopredizvici@gmail.com, info@challenges.mk
Step 5: The pictures will be printed in poster format together with your story or motto.
Step 6: Participate in our Rare Disease Day activities and help in raising public and institution awareness about rare diseases
Step 7: Be a part of Rare Disease Day 2014 – Let’s Join Together for Better Care!
We are expecting your e-mail or phone call.
Life With Challenges wishes all of you Happy Holidays!
