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!
TO THE TOP FOR BETTER LIFE!
Climbing Great Korab in the name of rare disease patients
On 7th of September, on Saturday, at 12.00h., in hotel VIP, Skopje, we organized a meeting between the National Alliance for Rare Diseases from Bulgaria and the Association of citizens for rare diseases “Life With Challenges”. The representatives from Bulgaria – Vladimir Tomov, president of the National Alliance for rare diseases Bulgaria (and Gaucher Association Bulgaria), Todor Mangarov, president of the Association for Pulmonary Hypertension and Vanja Toteva from Pulmonary Hypertension, stated their support towards Macedonian patients with rare diseases. At the meeting we discussed about the cooperation between the associations, the challenges that patients face, the possibilities for problem solutions and support for improvement of quality of life of patients with rare diseases.
Vladimir Tomov, president of the National Alliance for rare diseases Bulgaria (and Gaucher Association Bulgaria), stated:
“It is not easy to provide therapy for all patients with rare diseases, but it is something that every country should do for the citizens that suffer from rare diseases. Therapy is crucial for saving human lives. As an alliance for rare diseases, we support Macedonian patients from 2008. Our cooperation started with a Gaucher patient meeting in Ohrid, Macedonia in 2008. We discuss about problems, we communicate regularly and we are trying to find long-term solutions for treatment and we are active in the field of raising public awareness about rare diseases. We hope that the patients from Macedonia will have the possibilities that patients from EU and Bulgaria have today. We are happy to be here and that we have a possibility to cooperate.”
Vesna Aleksovska, president of the Association of citizens for rare diseases “Life With Challenges”, stated:
“In our association, today we have 50 patients connected with different rare diseases as: Gaucher, Pulmonary Hypertension, Allagille Syndrome, Phenylketonuria, Prader Willie Syndrome, Tyrosinemia, Hereditary Angioedema, Congenital Muscular Dystrophy, Congenital Cataract, Epidermolysis Bullossa, Agromegalia and other. After the Program for rare diseases brought by the Ministry of Health in 2009,only 3 patients were treated. Month ago the Ministry of Health started providing treatment for one girl with Gaucher who was in critical condition. Today with donation from the humanitarian program of Genzyme, Sanofi, 4 patients with Gaucher are treated and 1 is on clinical study. All other patients are left without a treatment. We hope that next year the Ministry of Health will increase the budget of the Program for rare diseases and that all patients will get the necessary treatment. These patients have a right to normal life that therapy can provide.”
At the meeting there were representatives from HEMOLOG (Hemophilia organizations) and NORA (Non-government organization for arthritis and rheumatism) as a support to the patients with rare diseases that have no treatment. Dragi Lulevik, from HEMOLOG stated:
„Today patients with hemophilia have treatment and possibility to lead a normal life. As patients we know what it means to have and not to have treatment and we hope that soon patients with rare diseases will get the necessary treatment and the possibility for normal life. Every human life is precious.”
On 8th of September, on Sunday, the Independence Day of Macedonia, “Life With Challenges” joined the climbing of the mountain top Great Korab in organization of the Mountain Club Korab, under the name – “To the top for better life!”. In the name of patients with rare diseases that have no treatment, around fifthy people climbed the highest mountain top in Macedonia Great Korab (2754m). “Life With Challenges” is greatfull to all the participans who supported our cause – better life for patients with rare diseases and raising public awareness about rare diseases in Macedonia. Except volunteers, patients with Pulmonray Hypertension and Gaucher climbed the top.
Vanja and Todor (Pulmonary Hypertension, Bulgaria) stated:
“This climbing was a challenge that we accepted with pleasure. Macedonia is a very beautiful country and we hope that the government will make the right steps towards providing treatment for the patients with rare diseases. Everybody deserves a chance for a better life.”
Vesna Aleksovska, president of the Association of citizens for rare diseases “Life With Challenges”, and patient with Gaucher type 1, climbed the mountain top to show that patients with rare diseases can be as everybody else with the possibility of treatment:
“As a Gaucher patient, I couldn’t be active all the time, because of the problems that this disease is causing. Thanks to the treatment provided with donation form Genzyme, Sanofi, in the past 4 years I can have a normal life, I work, I study, I’m forming a family and I can contribute to the development of our society. I climbed Great Korab to show that patients can be much more than patients when they have therapy. Every patient can be an active citizen of Macedonia, with treatment. I congratulate the Independence Day of Macedonia and I call upon the responsible institutions in Macedonia to start caring about the patients with rare diseases. We deserve to have a normal life. I hope that next year more patients will have a possibility to climb Great Korab and feel the freedom.”
This activity was realized in the name of patients with rare diseases, who have no treatment and cannot be included in such physical activity. We hope that we contributed towards raising public awareness about improving quality of life of patients and families with rare diseases. We are thankful that a lot of people joined our group to the top, in the name of the patients, where we waved our flag of rare diseases.
The mountain club Korab, is organizing this activity for the 22nd time. The length of the climb was 18160 meters in both directions. We are grateful that the Club Korab embraced our cause and help us in the organization of our group.
Thanks to the volunteers and support form associations, media, sponsors, the Children Clinic, Mrs. Mary Jo Wohlers – USA Embassy, Genzyme, and many others, “Life With Challenges” will continue towards accomplishing the goal – providing treatment for all patients with rare diseases and improving quality of life for patients and families that face life with a rare disease.
Vesna Aleksovska, President of “Life With Challenges”
+389 70 705 446, zivotsopredizvici@gmail.com, info@challenges.mk
Инфо:
Здружението на граѓани за ретки болести „Живот со Предизвици“ е основано за помош и поддршка на пациенти и семејства. Заедно сакаме да креираме подобар живот за пациентите со ретки болести.
Shoqata e qytetarëve për sëmundje të rralla “Jeta me Sfida” u themelua me qëllim për të ndihmuar dhe mbështetur pacientët dhe familjet. Së bashku ne mund të krijojmë një jetë më të mirë për pacientët me sëmundje të rralla.
The association of citizens for rare diseases “Life With Challenges” is founded for support and help of patients and families. Together we want to create a better life for patients with rare diseases.
Придружете ни се / Bashkohu me ne / Join us:
https://www.facebook.com/LifeWithChallengesi
https://www.facebook.com/groups/312483895490987/
http://www.youtube.com/user/lifewithchallenges?feature=mhee
Dear Members and Supporters,
The Association of citizens for rare diseases Life With Challenges in cooperation with the Bulgarian National Alliance for Rare Diseases is organizing a meeting of patients with rare diseases.
The meeting will be held on 7th September, at 12.00 in Skopje, Hotel Vip.
Subjects of discussion:
Interested participants can confirm presence on e-mail: zivotsopredizvici@gmail.com, info@challenges.mk
Thank you for your attention
Vesna Aleksovska,
President of the association
Dear members and supporters,
The Association of citizens for rare diseases “Life with Challenges”, this year will climb the top Great Korab on 8th of September, in organization of the Mountain Climbing Club Korab from Skopje.
If you are interested in this challenge please join us and clim Great Korab in the name of the patients with rare diseases, with a goal for raising public awareness and improving quality of life of patients and families that face life with rare diseases. Our group name is “To the top, for better life!”. Write on our e-mail address: zivotsopredizvici@gmail.com, info@challenges.mk and climb the top for the association of rare diseases.
The Mountain Climbing Club Korab from Skopje is organizing this event traditionally, for the 22nd time. The event will take place on September 8, 2013 (Sunday). The route of the climb to GOLEM KORAB (2764m a.s.l.) is 18160m long, altogether. It is marked and the guides from the Club KORAB will provide assistance to the participants. There will be four points on the route for first aid help. Drinking water will be found on several spots on the route. The starting point is on 1450 m a.s.l.
Support for organization of the rare disease group: Club Korab, Genzyme/Sanofi Aventis, Concept Marketing and Communications.
More information about the organization from the Club Korab you can find on the following link: http://korab.org.mk/indexen.html
Info about the association:
Здружението на граѓани за ретки болести „Живот со Предизвици“ е основано за помош и поддршка на пациенти и семејства. Заедно сакаме да креираме подобар живот за пациентите со ретки болести.
Shoqata e qytetarëve për sëmundje të rralla “Jeta me Sfida” u themelua me qëllim për të ndihmuar dhe mbështetur pacientët dhe familjet. Së bashku ne mund të krijojmë një jetë më të mirë për pacientët me sëmundje të rralla.
The association of citizens for rare diseases “Life With Challenges” is founded for support and help of patients and families. Together we want to create a better life for patients with rare diseases.
Придружете ни се / Bashkohu me ne / Join us:
https://www.facebook.com/LifeWithChallengesi
The association of citizens for rare diseases LIFE WITH CHALLENGES, together with the association of citizens HAE Macedonia, in cooperation with the Medical High School Jane Sandanski from Shtip, organized an educative lecture for rare diseases, on 28th of June, 2013th.
The present students had a possibility to get to know the associations and their work much closer and they were able to get basic information regarding diagnosis, monitoring and treatment of rare diseases as: Gaucher, Allagile Syndrome, and Hereditary Angioedema.
This educative lecture was just a beginning of a fruitful cooperation with the Medical High School Jane Sandanski from Shtip, and we are grateful for the opportunity to share knowledge and information with students in an innovative way, where lecturers are the patients and parents themselves as they have great experience in coping and living with rare diseases.
Education of students is important as they will be the future medical professional in which will care for the future patients.
We are sure that this cooperation will continue in future and we hope that other schools and faculties will embrace this opportunity to expand knowledge in the area of rare diseases in order to contribute to early diagnosis and timely and appropriate treatment for the patients.
These activities will continue further with a goal to increase and activate membership and volunteers and to share knowledge and expertise in the area of rare diseases.
Financial help from the Ministry of Labor and social policy
http://www.mtsp.gov.mk/?ItemID=35627DB6D7CF734498CCF9743B34B99F
Child 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 speech (blind person or practically blind person, deaf person or practically deaf person, person with absence of speech, person with impaired speech because of child paralysis, person with autism, person with lost ability to speak) and
– different kinds of disabilities (combined) in development)
The right to financial help belongs to one of the parents of the child, legal guardian or person with permission (permission from the center for social work) to raise the child in R. Macedonia if the child is a citizen of R. Macedonia, until the age of 26 years, if the child is not in a state institution.
The financial help is 4.202 MKD.
The amount is aligned considering the increase of costs for life from the previous year published from the National Institute for Statistics, in January for the current year.
The procedure for achieving or extending the right to financial help shall be initiated upon the request of the parent or guardian of the child.
Request to exercise the right with required documentation is submitted to the center for social work, responsible for the area where the applicant resides.
The right to financial help is realized from the first day of the month following the request.
The user of the right to financial help is obligated to notify the social work center about any change in the facts and circumstances that were the basis for a financial help within 15 days from the date when such changes occur.
The request for extension of the right to financial help for the next year shall be submitted by 31 March of that year.
If a request for extension of the right for financial help is filed after the deadline, the applicant will obtain the continuation of the right at the first day of the month following the month in which the application for extension is filed.
The association of citizens HAE Macedonia organized a concert at the city park to mark the HAE world day on 18th of May. At the concert there were a lot of performers as: Zlata Meglenska, Natalija Slaveva, Angelina Stojanovska, Igor Uzunov, Anja Veterova, EUREKA, Sara Markoska, Nade Talevska, Bojana Atanasovska, Aleksandar Belov, Kulturno Umetnicki Rabotnici, Andrej Anchevski.
In a pleasant, relaxed and war atmosphere the voice of patients was heard and they appealed that is time for Macedonia to make a step forward towards provision of therapy and treatment for the patients.
Students from the Medical Faculty, members of EMSA and activists from MOF volunteered at the event and they shared leaflets with information about HAE as a rare disease.
