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”
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: