News/Press Releases

TO THE TOP FOR BETTER LIFE!

Climbing Great Korab in the name of rare disease patients

On 7^th 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 8^th 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 22^nd 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:

http://challenges.mk/

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:

1. Cooperation and support
2. Sharing experience about treatment and quality of life of patients
3. Mutual activities
4. Climbing the Mountain Top Korab, on Sunday, 8th of September.
5. Possibilities for support and cooperation
6. Questions

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:

http://challenges.mk/

https://www.facebook.com/LifeWithChallengesi

https://www.facebook.com/groups/312483895490987/

http://www.youtube.com/user/lifewithchallenges?feature=mhee

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 28^th of June, 2013^th.

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.

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.

Running for better life – the team won the first place on 5km in the category – group women 

„Life With Challenges“, „HAE Macedonia“ and „HEMOLOGГ“, as a group entered the Skopje Marathon in the race of 5km and 21 km under the group motto – Running for better life. 100 participants were running for rare diseases. 

In this group there were also parents and patients with a hope that one day they will run together with their children.  They were happy that 100 participants are supporting them. When you have support you know that you are not alone and that you can accomplish much more. We are happy that 100 people were running for our cause. We said thank you a million times and we will say it a million more. Support means a lot.

In Macedonia there are over 15 different rare diseases and over 200 patients. For some of these diseases there is no treatment. Patients without treatment have shortened life span, and physical and psychical disabilities, which makes them a burden to society. With treatment, these patients can lead a normal life and contribute in the growth and development of their country.

For the patients with hemophilia today in Macedonia there is an appropriate treatment. HEMOLOG joined our cause in order to support us, knowing how difficult it is to provide appropriate and efficient treatment for patients, especially for rare diseases.

The campaign for raising public awareness was supported by Herbalife  (http://www.herbalife.mk/), who participated in the organization of the group Running for better life in the Skopje Marathon.

As supporters joined the Association for Physiotherapy of R. Macedonia  (www.fizioterapevt.org.mk), and the Medical High School from Shtip with the support of the municipality of Shtip.

The participation in the Skopje Marathon is a part of our campaign for raising public awareness for rare diseases in Macedonia and  about how with treatment patients can have a normal life.

The campaign for raising public awareness for rare diseases in Macedonia – Life is a puzzle, let’s collect it together!, as a part of the project – Do not cry fight for your rights,  is supported by:

Information about the association:

web page: http://challenges.mk/

facebook page: https://www.facebook.com/LifeWithChallengesi

facebook group: https://www.facebook.com/groups/312483895490987/

Contact:

Vesna Stojmirova,

President of „Life With Challenges“

zivotsopredizvici@gmail.com, +389 70 705 446

5th – 7th April 2013 in Sarajevo (BiH)

This was the biggest meeting of Gaucher and LSD patients in our region ever.

There were more than 100 participants:

‐ around 25 LSD patients,

‐ 18 physicians, nurses and researchers,

‐ families and friends of the patients,

‐ representatives of the following patient associations:

o Rare Disease Association of Bosnia and Herzegovina,

o Slovenian Gaucher Association,

o Rare Disease Association “Life with Challenges”, Macedonia,

o Serbian Gaucher Association,

o Slovenian Fabry Association,

o Slovenian Muscular Dystrophy Association,

o Rare Disease Association “Life”, Serbia,

o Hunter Syndrome Association Serbia,

o Croatian Alliance for Rare Diseases,

o National Alliance of People with Rare Diseases, Bulgaria,

‐ representatives from Bosnian Ministry of Health,

‐ journalists.

At this meeting, we learned about the situation regarding treatment of LSD in individual countries. There are big differences between countries: how the patients are connected to each other, how they are treated and subsequently how big their quality of life is. We shared the examples of good practice and good experience and we promised to each other our further support and help.

The main lecture was prepared by Dr. Nadia Belmatoug (France) who presented Gaucher disease. Many questions and a discussion followed this presentation. We are grateful to Dr. Nadia Belmatoug who kindly accepted our invitation and shared with us her rich experience on treatment and research of Gaucher disease.

The attendees were very satisfied with the workshops where we shared our personal experience about living with the disease. The patients, family members and physicians spoke about everyday challenges they are confronted with. Our fears and problems are similar, no matter where we live. Fortunately, among us, there are many brave and generous persons who have already done a lot for the well‐being of LSD patients. This brings hope and courage for our future activities and cooperation.

We are happy that many physicians and nurses from all countries from our region attended the meeting. We are grateful to our physicians for their sustained efforts to improve the situation in rare disease area. It is important that physicians and patients work together, because together we are stronger.

Finally, we would like to say a big thank you to Genzyme, to Asocijacija XY and to Koalicija organizacija u zdravstvu u BiH for their logistical and financial support: transportation organisation, hotel reservation, propaganda material preparation, conference room preparation, program for children, sightseeing tour etc.

A special thanks goes to  all participants, because also their presence, their contribution and cooperation made this meeting a successful one.

Looking forward to our further cooperation.

With best wishes,

Borislav Đurić, Rare Disease Association of Bosnia and Herzegovina

Darinka Šulić, Serbian Gaucher Association

Davor Duboka, Serbian Gaucher Association

Vesna Stojmirova, Rare Disease Association “Life with Challenges”, Macedonia

Irena Žnidar, PhD, Slovenian Gaucher Association

On 20-21st april 2013 patients and doctors from the Balkan countries gathered in Park-hotel “Moskva” Sofia to share their experience with living with a rare disease and the treatment and socialization problems they face at the Second Balkan RD Conference “Better communication – better treatment”.

The conference was opened by the Chairman of the National Alliance of People with Rare Diseases Vladimir Tomov – the host of the event. The participants were welcomed also by Dr.Tasheva – an expert at the Bulgarian Ministry of Health, and by a representative of the National Health Insurance Fund.

Prof.Rumen Stefanov from the Information Centre for Rare Disease and Orphan Drugs in Plovdiv spoke about the European present and future policies in the field of rare diseases. Eric Lange presented the results of a project to develop guidelines for optimal care for PKU patients in all European countries. Lisen Mohr presented the services performed by the Norvegian Rare Disease Centre directed towards the RD patients. In the end of the first session Vlasta Zmazek spoke about EURORDIS activities and projects.

After the break Prof.Stefanov presented the current situation with rare disease care and politics in Bulgaria. Four years after the start of the National Programme for Rare Diseases it is still expected the diagnostic and laboratory activities, related to the genetic screening, to become financed by the National Health Insurance Fund; there is no detailed analysis and assessment of the achievements so far and restructuring of the remaining tasks; there is no patients-doctors consensus on the future goals and tasks; unadequate funding and lack of transparent control over Programme implementation.

Next Prof.Ugur Ozbek from Istanbul University spoke about the current situation of rare disease issue in Turkey and the health system organization. Bojana Miroslavlevic from Serbia moved the audience with her account about the eight children with Button disease in her country and the struggle of their parents, the fundraising campaigns, the search for help and treatment abroad and the fight for their lives. Dr. Borislav Borisov presented the new European system for adverse reaction to drugs reporting. For a first time not only the medical professional but also the patients will be able to send information about the unexpected effects of drug administration to achieve more precise and up-to-date information on medicines safety. Dimitar Valchev talked about the psychological support to rare disease patients and their families aiming to improve their current condition.

The next session was dedicated to the situation concerning rare diseases in the different Balkan countries. It was opened by Vladimir Tomov who made a historic overview of the activities of Gaucher Association and National Alliance of People with Rare Diseases. He pointed out the  importance of the international help and collaboration for the progress in the field of rare diseases in Bulgaria. Now that some of the rare conditions’ treatment is reimbursed by government and the relations with the authorities are becoming more and more positive we are working more diseases to be financed by NHIF and to get better care for the patients. Dragan Djurovic from Serbian CF Association spoke about the problems in his home country. Sanja Peric from Croatia demonstrated the sucesses of their PKU patient organization, the activities and summer camps for the youngsters with the condition, The books and magazines they publish. Borislav Djuric from Bosnia spoke mostly about the problems of the patiemts in his small country and the fact that many of them go abroad to the neighbouring states to receive treatment. Ralica Stan and Kate Theohari narrated about the situation in Romania and Greece. Vesna Stojmirova mentioned the positive experience of the Macedonian patient organization with a foreign diplomat wife who is their public supporter and helps a lot for getting their issues in the media or helps them in their contacts with the government authorities. The session ended with Ivan Ivanov’s narrative about the Organization of People with Thallasaemia in Bulgaria and the successes they have achieved.

The participants from Bulgaria, Greece, Romania, Turkey, Croatia, Montenegro, Slovenia, Serbia. Bosnia, Macedonia and Albania continued the disscussions on the next day, when they watched the presentations about the latest achievements in some rare diseases’ treatment made by Prof.Mihailov, Prof. Gergeltcheva, Prof.Zaharieva, Prof. Turnev, Prof. Stoeva and Dr.Kadam.

We hope that the new contacts and the exchanged information will help to achieve new milestones in the rare disease care and to create an active Balkan community of patients and medical professionals.

Life With Challenges,  HAE Macedonia & HEMOLOG

Association of citizens for rare diseases “Life With Challenges“ together with the association for Hereditary Angioedema – HAE Macedonia and the association for hemophilia HEMOLOG , will join the Skopje Marathon with a group running under the motto Running for a better life.

Link to Skopje Marathon page – http://www.skopskimaraton.com.mk/index.html

Link for participation in the marathon – http://www.skopskimaraton.com.mk/prijavaonline.html

Note: If you are applying to participate in our group for rare diseases, in the part where it says GROUP, please write TRCAME ZA PODOBAR ZIVOT, that is the name of the group running to raise public awareness about rare diseases.

Also please write to us so we know that you are running in our group and you’ll get a t-shirt with our motto.  (zivotsopredizvici@gmail.com)

Link of the map for the race of 5 km – http://www.skopskimaraton.com.mk/images/mapa2011.jpg

In Macedonia there are 15 different rare diseases and over 200 patients who live with rare disease. For some of these diseases there is a treatment and for some research is in progress.

Everyone who wants to support us as a participant or sponsor is welcome.

Let’s raise public awareness about rare diseases in Macedonia together!

The campaign for raising public awareness is also supported by Herbalife, who joined our group Running for better life.

Campaign for raising public awareness about rare disease – Life is a puzzle let’s collect it together!

Supported by:

Information about the association:

Web page: http://challenges.mk/

Facebook page: https://www.facebook.com/LifeWithChallengesi

Facebook group: https://www.facebook.com/groups/312483895490987/

Contact:

Vesna Stojmirova,

President of Life With Challenges

zivotsopredizvici@gmail.com, +389 70 705 46