News/Press Releases

  “Conference for establishing National Alliance for Rare Diseases of R. Macedonia“, on 22^nd of March, 2014 in Skopje, Macedonia

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?

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.

zivotsopredizvici@gmail.com, 070 705 446

Theme: Care
Slogan: Join Together for Better Care
Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others require intensive physical assistance and equipment. Care can consist of medicines, products and devices, expert medical consultation, physical therapy, social services, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members. Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to Join Together for Better Care.
Patients and their families who feel isolated by the rarity of their disease should know that there are more than 6000 different rare diseases affecting over 60 million people across Europe and North America alone and millions and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone.

Healthcare professionals, researchers, pharmaceutical companies, and policy makers also frequently feel isolated in their struggle to find and provide care for rare diseases. Experience shows that bringing together scattered knowledge and resources for people living with rare diseases is the most efficient and effective way to mobilise the care patients and families need and deserve. In Europe, there are several areas in which access to rare disease care is advancing:

Shaping policies to improve access to medicinal products for rare diseases

Identifying and improving access to specialised social services for rare diseases

Centres of Expertise and European Network References

National rare disease plans for countries in the European Union … and beyond

The theme for 2014 highlights that the many different facets of rare disease care represents a universal need for patients and their families around the world. Advocating at the local and national level to improve the lives of people living with a rare disease and their families is necessary.

Considering rare diseases from an international perspective is also essential in order to send a strong message of hope to the millions of rare disease patients and families throughout the world who can break their isolation through a vast, united international network of solidarity. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need.

Let’s Join Together for Better Care!

Translation of invitation: Invitation – Rare Disease Day

Dear collaborators,

The Association of citizens for rare diseases “Life With Challenges”, invites you to the “First CEI Conference for building regional network of organizations for Rare Diseases”, on 23^rd – 24^th of March, 2014 in Skopje, R. Macedonia.

First CEI Conference for building regional network of organizations for Rare Diseases is a project that will contribute to strengthening of the capacities of the organizations and to increasing networking and communication between the organizations from the CEI region that work in the field of rare diseases. With this meeting we will contribute towards raising awareness (general public, government institutions, and medical professionals) about rare diseases in Macedonia and the CEI Region.

The focus of the project First CEI Conference for building regional network of organizations for Rare Diseases is on strengthening leadership in advocacy and lobbying for patients’ rights. The conference meeting is for sharing best practices in advocating for patients’ rights and sharing information on implementation of National Plans/Strategies on rare diseases in different countries.

 “First CEI Conference for building regional network of organizations for Rare Diseases”, on 23^rd – 24^th of March, 2014 in Skopje, R. Macedonia.

Sincerely,

Vesna Aleksovska,

President 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!

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