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Events for raising awareness on rare diseases, December, 2017

Everyone for Jane, Raising awareness on SMA, December, Ohrid, 2017

In December, in Ohrid, the citizens organized by Gordana Loleska, managed to realize an event for raising awareness on Spinal Muscular Atrophy. As there is a drug approved and available but it is still not accessible for children in Macedonia. We hope that new medicines for different rare diseases will be available in 2018.

Football Game, elementary school, Skopje, December, 2017

The children from an elementary school in Skopje, Dimitar Miladinov, organized a football game to raise awareness on the problems and challenges of children with rare diseases. In the game there were also children with rare diseases, who played together.

Rare Disease Day Flag under water for New Year, December, 2017, Ohrid, Macedonia

For the 16th time, the members of the Dicing centre Amfora, and the Club for under water activities Ohrid, in cooperation with the Alliance for under water activities of Macedonia, decorated the Christmas tree under water in Ohrid lake, Macedonia. Traditionally as every year they decorated the tree in the lake at the Bay of Bones. Even the youngest members of the diving club participated in this activity.

Santa Clause race, Ohrid, December, 2017

In December, 2017 in Ohrid there was an event for New Year – a race of Santa Clause. Gordana Loleska made a cooperation with the organizers and at the end of the race people could take picture with the participants and the rare disease day flag to raise awareness on rare diseases.


EUROPLAN Conference – Building future for rare diseases

The first EUROPLAN conference in Macedonia on the topic of rare diseases was held on the 10th November 2017 from 10:00 am to 2:30 pm in the hotel Holiday Inn in Skopje. Experiences and examples from the area of the rare diseases from Europe and the region were shared at the conference, as drive towards discussions and identification of possibilities for the improvement of the situation in Macedonia. Through discussions this conference works toward the possible solutions to provision of secure future and good-quality life for the patients and families facing a rare disease in our country.

For the first time at such a conference were present the institutions ( Health-care committee, Government of RM, Ministry of Finance, Ministry of Health, Ministry of Labour and Social Policy, Health Insurance Fund of R. Macedonia, The Macedonian Academy of Sciences and Arts, Agency for Medicines), health-care workers (Committee for rare diseases , University Children’s Clinic, University Clinical Centre  Skopje) representatives of pharmaceutical companies , representatives from associations form Macedonia and the region and EU, patients and parents facing a rare disease.

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Brochure in Macedonian: Еуроплан

Statement by Rebeka Jankovska- Risteski, President of the National Alliance for Rare Diseases of R. Macedonia: In 2015 as a result of our loud endeavours, the wider community became aware of our sufferings and problems- the difficult diagnostic for rare diseases in Macedonia, the unavailability of medicines for treatment, and even more the price of treatment. A dedicated team of people some of which, to my great pleasure, I see here today and that causes a sense of debt towards them and my entire respect, have taken up the challenge to establish and to give life to the Rare Disease Programme. The Programme has encompassed several medicines, namely 29 medicines for 18 diagnoses, for which we as a non-governmental sector suggested, and the professional health-care workers decided that they should inevitably be covered in the regular treatment for rare diseases.

The problems are many and we often reacted to the responsible ministries for changes in the laws, bylaws, rulebooks … Many things are necessary, such as defining the notion of a rare disease, with this many patients will become visible and recognized as a special category of people for whom a special treatment and therapy is needed; defining proper procedure for timely procurement of medicines, a centre for rare diseases, even a virtual one, which will have a team of its own, responsibilities and a manner of working and, of course, bigger budget for the procurement of medicines and other kinds of medical interventions.

Statement Anja Bosilkova Antovska, Wilson Macedonia: As persons with rare diseases we live in a miserable condition, invisible in front of the law. The treatment of rare diseases is regulated only on the surface. The Programme is a big step forward, but there remains much more to be done. We call upon the system to work regardless of the political situation. Patients must not be left without medicines, as it is still the case, for more than 4 months. Today we are here to talk about solutions not only the problems. We fight for early diagnosis, early treatment, for the availability of social and health care services, for independence and quality of life.

Statement Vesna Aleksovska, President of the Citizen Association for Rare Diseases Life with Challenges: Today we are here to create future for the people with rare diseases. Today, you present here at this conference are here because you work to save human lives, to make the future possible for people with rare diseases. Together I think we can make many people happy, together we can help the families with rare diseases to have better quality of life, to get the independent future they deserve. We have several priorities to discuss today regarding the proposed National Plan for Rare Disease. We don’t want to discuss the problems, we want to discuss solutions, concrete actions that should be undertaken this year, the following year and further on.

Rachella Mizrahi, Committee for Rare Diseases stated that it had been a real challenge to work on the rare disease program. From the beginning we had to discuss for a definition, approach and solutions.

Furthermore she explained the work of the Committee, the creation of the registry, the challenges and the solutions that were reached in the period between 2015 and 2017. For the first time statistical data was presented regarding the number of registered patients, and the road which a patient travels was explained, from registration to receiving treatment.

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The present guests from the region and EU talked about their experiences regarding dealing with and managing the problems and challenges which rare diseases carry. The focus was on successful stories in terms of regulative and the importance of the existence of a National Plan for rare diseases.

Ariane Winman, EURORDIS talked about the EUROPLAN project in the EU countries: Why are National Plans Important?

Marie-Pierre Bichette from the French Alliance for rare Diseases explained the achievements of the French national plan for rare diseases: Methodology, monitoring and implementation of national plans

Davor Duoboka, National Alliance for Rare Diseases – Serbia presented the advancement regarding rare diseases in the past five years in Serbia.

Sanja Perich, National Alliance for rare diseases – Croatia presented the Help line for patients and families with rare diseases.

Vlasta Zmazek, Debra Croatia   addressed the innovations in social care for patients with rare diseases

Vlado Tomov,National Alliance of people with rare diseases, Bulgaria, presented the work of the Centre for Rare Diseases in Bulgaria and the advancement with the national plan for rare diseases.

Borislav Gjurich, Association for rare diseases in Bosnia and Herzegovina presented the advancement regarding rare diseases in the past five years in Bosnia and Herzegovina.

 

The conference continued with the working groups for priorities regarding rare diseases in Macedonia, namely:

  • Legislation about rare diseases in RM
  • Committee and Registry for Rare Diseases
  • Diagnostics and Treatment (medicines, orthopaedic devices)
  • Centre for rare diseases and social services

The conclusions from the conference together with the proposal of the national plan for rare diseases will be delivered to all the relevant institutions in Macedonia in order to find a long-term solution for the challenges with which people with rare diseases and their families face.

 

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Организатори на конференцијата:

Национална Алијанса за Ретки Болести на Р. Македонија

Здружение на граѓани за поддршка на лица со ретка болест ВИЛСОН Македонија

Здружение на граѓани за ретки болести ЖИВОТ СО ПРЕДИЗВИЦИ Битола


EUROPLAN CONFERENCE R. MACEDONIA – Long term system solutions for rare diseases

EUROPLAN CONFERENCE R. MACEDONIA Long term system solutions for rare diseases

Together we are building a future for people with rare diseases

10 November, Holiday Inn, Skopje

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AGENDA

  10.00 – 10.10 Opening speech
  Rebeka Jankovska-Risteski, NARDM Introduction
  10.10 – 10.30 Rare Diseases in Macedonia: Problems and Solutions Needed
  Anja Bosilkova Antovska, WILSON MACEDONIA Regulative on rare diseases in Macedonia
  Vesna Aleksovska, LIFE WITH CHALLENGES Draft national plan for rare diseases in Macedonia
  10.30 – 11.30 Experience and Best Practices from EU and the Region
Ariane Weinman, EURORDIS EUROPLAN Project in EU Countries: Why are National Plans Important?
Marie-Pierre Bichet, French Alliance for RD Achievements of the French National Plan for Rare Diseases: Methodology, Monitoring, and Governance of National plans
Davor Duboka, National Alliance for RD – Serbia Progress in Rare Diseases in the Past 5 Years in Serbia
Sanja Peric, National Alliance for RD – Croatia Help-Line for Patients and Families with RD
Vlasta Zmazek, Debra Croatia Social Innovation Care
Vlado Tomov, National Alliance for RD – Bulgaria Center for Rare Diseases / Progress Made with the National Plan
Borislav Djurikj, Association for rare diseases,
Bosnia and Herzegovina
Progress in Rare Diseases in the Past 5 Years in BiH
11.30 – 11.45 Coffee break
11.45 – 12.45 Working Groups on RD Priorities in Macedonia
  Subject Main participants*
1) Regulative for rare diseases in R. Macedonia Commission for health – Parliament of R. Macedonia, Government of R. Macedonia, Ministry for finance
2) Commission for rare diseases and registry for rare diseases Ministry of health, Commission for rare diseases of R. Macedonia
3) Diagnosis and treatment (drugs, supplements, orthopaedic devices) Macedonian Academy for Science and Art, Health Insurance Fund, Agency for Drugs
4) Centre for rare diseases, social services Ministry for labour and social policy
12.45 – 13.30 Presentations from work groups and discussion
13.30 – 13.45 Conclusions
13.45 – 14.30 Cocktail lunch

*The work groups are just a preposition, the representatives can choose where to participate. Also the participants from patient organizations will be included in the work groups. Each group will have a facilitator.


International Gaucher Day, 1st October, 2017

The International Gaucher Day (1st October) is marked in over 40 countries where organisations, members of the European Gaucher Alliance, organize different activities for the patients, families, doctors, researches….In Macedonia, the Citizens’ association for Rare Diseases LIFE WITH CHALLENGES…..

Over 10 patients in Macedonia suffer from Gaucher Disease. The disease is manifested in three types, but in Macedonia only Type 1 is present. This type of the disease is manifested with enlarged spleen and liver, bones easily prone to fractures, low platelets count and low hemoglobin, lack of energy, etc. Until 2015 5 patients received treatment through donation via a humanitarian programme of the company Genzyme Sanofee Aventis and one through the programme for rare diseases of the Ministry of Health. Since 2015 enzyme replacement therapy is available for all patients provided by the Programme for Rare Diseases of the Ministry of Health. This therapy is present worldwide since 1991. With this therapy all the symptoms that have occurred in the course of the years decrease and even diminish and  patients themselves can have normal life.
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As a Gaucher patient I am thankful for the advancement regarding the patient treatment of Gaucher Disease in Macedonia. Since my diagnosis 23 years ago until today I am happy that all newly diagnosed patients with this disease do not have to fear for their future, on the contrary, with the right diagnosis they will have the opportunity to receive timely treatment which is a gold standard in the world and with this they have the opportunity for a normal life without feeling the symptoms of the disease in the long term. I do hope that all the rare disease patients in Macedonia will have the same opportunity to lead a normal life in Macedonia. With the therapy we can have a family, we can work and we can contribute like any other citizen of R.Macedonia– Vesna Aleksovska, President of Life With Challenges.

IGD 2017

Although quite different among themselves, people suffering from rare diseases and their families have equal difficulties that stem precisely from the rarity of their disease. The problems are numerous, from setting the final diagnosis and access to proper treatment to social exclusion and life on the margins of society.

Despite everything, strength, optimism and the belief in better tomorrow are the main “weapon” of the patients and their families in the fight for a long life of good quality. It is up to us to give them hand and ease their journey…

 


Postal stamp – Children with rare diseases

The citizens’ association LIFE WITH CHALLENGES from Bitola in cooperation with Macedonian Post  promoted a post-stamp titled Children with Rare Diseases on 4th October at MASA.

Loran Kufalo is the author of the post stamp with nominal value of 48 denars, which has been published in print of 6000 copies.

Statement by Vesna Aleksovska, President of the Association:

To live with a rare disease means to live with a friend, not with a foe. Simply we get to know the rare disease and learn how to live best with it. We face many challenges, starting with the diagnosis, then the search for information, medicines, health and social services. The reality is that it is necessary for all the institutions to work together with the associations in order to have advancement. Together we are stronger and we can do more. When we have help we can work and have families, we can lead a normal life as everybody else who does not face a rare disease. We deserve to be part of the society and make our contribution.

The post-stamp is the first in the world dedicated to rare diseases and we are proud that our member Gordana Loleska, employed at Macedonian Post, has initiated this process and Macedonian Post has realized it as such. With this initiative we want to raise the public awareness about rare diseases and the challenges that families face.

Statemen, Iva Petrevska, patient with rare disease Epidermolisis Bulosa

I wish that they invented a therapy for all rare diseases, for some there is, for others there isn’t. For me there isn’t, but I can live without therapy. I’ve got my mum and dad who are always here with me. A big thank you to Macedonian Post who have thought of us, the children with rare diseases.

Statement, General Manager of Macedonian Post Office, Fadis Rexhepi:

All the institutions in Macedonia, all the greater companies should make everything possible to improve the life of families facing a rare disease. We should help raising the awareness for these diseases in Macedonia. This post stamp dedicated to the Children with Rare Diseases is but a small gesture that we could offer, let’s hope that we’ll be able to do much more.

 


Running for rare diseases on International Athletic Ohrid Marathon

Ohrid is running again in support of rare diseases. On 8th September, 2017 the Independence Day of R. Macedonia the International Athletic Marathon started in Ohrid.

The organization of the teams for rare diseases was in the capable hands of our volunteer Gordana Loleska, a mother who showed that a lot can be done for raising awareness on rare diseases.

The Minister of finance Mr Dragan Tevdovski, participated in the Marathon in support of rare diseases.

Statement, Gordana Loleska, volunteer of LIFE WITH CHALLENGES: 

Ohrid showed that is together with people facing rare diseases. Again we are spreading the message: People with rare diseases, you are not invisible, we are your voice! 

Statement, Vesna Aleksovska, President of LIFE WITH CHALLENGES: 

We expect that the Minister of Health will have understanding for the needs of the families with rare diseases, for the necessary treatment that is needed for a normal life. We believe that  the promises about therapy not being late will be realized, because a lot of patients were facing problems with not getting therapy for  more than 1 month. набават. We hope to cooperate together, all of us, associations, and institutions so that we can improve quality of life of people with rare diseases. Patients can not wait for politicians to decide for their life, therapy should be procured on time, the health system should work in favor of patients. The Ministry of finance has to find a way to finance the Program for rare diseases in a way that all patients can get necessary treatment. Patients should not beg or ask donations, no matter what kind of disease they are facing. 

After the registry for rare diseases started development in 2015, in 2016 there were 30 drugs procured for around 18 rare diseases. There is still a need for different drugs for new patients and new diseases. At the moment we are asking for drugs for Familial Amyloid Polyneuropathy, for Spinal Muscular Atrophy, Pulmonary Fibrosis, Muscular Dystrophy Duchene, Mielodysplastic Syndrome and others. We are still waiting on an answer about special bandages for Epidermolisis Bulossa fro the Health Insurance Fund. And we are in contact with the ministry of Social politics about personal assistants for people with ALS and other similar conditions.

We are thankful for the support from TAMARO markets that were running in the marathon for rare diseases and to the club from Struga and students from Ohrid, as to the athletic clubs from Ohrid.


Climbing Korab , September 2017

Life With Challenges continues the tratidion of climbing Korab. On 3th of September, 2017 the association KORAB set the flag of rare diseases on the top of the highest mountain in Macedonia, Korab. 

Statement, Vesna Aleksovska, President of LIFE WITH CHALLENGES: 

After the registry for rare diseases started development in 2015, in 2016 there were 30 drugs procured for around 18 rare diseases. There is still a need for different drugs for new patients and new diseases. At the moment we are asking for drugs for Familial Amyloid Polyneuropathy, for Spinal Muscular Atrophy, Pulmonary Fibrosis, Muscular Dystrophy Duchene, Mielodysplastic Syndrome and others. We are still waiting on an answer about special bandages for Epidermolisis Bulossa fro the Health Insurance Fund. And we are in contact with the ministry of Social politics about personal assistants for people with ALS and other similar conditions.

We expect that the Minister of Health will have understanding for the needs of the families with rare diseases, for the necessary treatment that is needed for a normal life. We believe that  the promises about therapy not being late will be realized, because a lot of patients were facing problems with not getting therapy for  more than 1 month. набават. We hope to cooperate together, all of us, associations, and institutions so that we can improve quality of life of people with rare diseases. Patients can not wait for politicians to decide for their life, therapy should be procured on time, the health system should work in favor of patients. The Ministry of finance has to find a way to finance the Program for rare diseases in a way that all patients can get necessary treatment. Patients should not beg or ask donations, no matter what kind of disease they are facing. 

 

This is a symbolic activity for raising public awareness about rare diseases in Macedonia, about the challenges that families face in their every day life. We are thankful to Ljuubomir Kotevski, president of Korab who accepted and supported this idea from the beginning.

We continue to fight further for people with rare diseases. We hope to contribute so that the future is a future that people with rare diseases want to have.


Running, paragliding and sailing for rare diseases

Ohrid is again giving a lot of support for rare diseases through different activities in July, 2017.

Beach Run is an event in 5 location near water in Macedonia in July, 2017. On 30.07.2017 was the final race in Ohrid. The teams of NRC nike Run Club Skopje and Ark Lotus Prilep were running for support of rare diseases.

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The organization for support of rare diseases was in the very capable hands of Gordana Loleska who showed that everyone can do so much more in support of families with rare diseases.

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Also there was support from the paragliding club Fly Ohrid and from the club Aqatica Divono who took the flag of rare diseases sailing.

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The program for rare diseases needs to have more financial support so that everyone who needs a medicine can get one through this life saving program. Every family deserves a chance for a better life. If medicine exists for a certin disease, it should be available as soon as possible. For now around 29 medicines are available through the program for around 18 diseases. We will continue as an association of citizens for rare diseases LIFE WITH CHALLENGES to support and fight for patients’ rights. In communication with all relevant institutions we will try to improve quality of life of families facing a life with a rare disease, a life with challenges.


Rare diseases at Ohrid Running

A volunteer of LIFE WITH CHALLENGES Gordana Loleska, in cooperation with companies and organizatins from Ohrid managed to organize teams who run in support of people with rare diseases in the event Ohrid Running.

 

This was a promotional event with a main goal to support running, sport, quality of life and healthy life.

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Statement Gordana Loleska, member of LIFE WITH CHALLENGES

„For the children with rare diseases and special needs on this event we had professionals but also parents and patients involved. The citiznes also supported our idea for raising public awareness on rare diseases. People with rare diseases deserve better quality of life, they deserve a chance to do most with what they have. Everyone can be successful if he has a chance to do so.“


Statement Vesna Aleksovska, president of LIFE WITH CHALLENGESИ

„Gordana is one of our most active members, she organizes many events in Ohrid and we are proud of her. This is just one more event showing support for people facing life with a rare disease. We need to remember that there are many social and health services needed to support families with rare diseases.  

After the register for rare diseases started in 2015, there are around 450 patients registered and around 40 basic diagnosis (70 different). With the new financing of the program for rare diseases at the Ministry of Health, now there are around 29 medicines for 15 around 15 different diagnosis in Macedonia. There is a need for more medicines for different diagnosis. If there is a drug, patients need to have it so they can have hope for life. We expect that medicines will be covered soon for FAP, Spinal Muscular Atrophy, Muscular Dystrophy – Duchene, Myelodisplastic Syndrome – MDS, Acute Myeloid Leukemia, Pulmonary Fibrosis and others.  We also ask for social services such as personal assistants for ALS patients and other patients with severe physical invalidity. We are still waiting on the Health Insurance Fund to approve refunding for special bandages and plasters for Epidermolisis Bulossa and other things that patients need.

We hope that the new Ministers of Health and Social Policy and Labor will find a way to make the Program for Rare diseases better. Institutions need to work together to make life easier on families with rare diseases.

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The event was supported by:

Tamaro Markets, Youth Club Red Cross Ohrid, NGO Option Ohrid, Cuba Libre IOhrid, Poposki Ordination Ohrid, Ohrid Super star talent show

 


Know AML – Fight AML , 21st of April

Know AML is the world’s first global AML awareness coalition supporting AML World Awareness Day on April 21. The mission of Know AML is to raise awareness and education in AML to patients, carers, families, healthcare professionals and the general public.

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In December 2016, during the American Society of Hematology (ASH) meeting, a collective of AML patient Leaders, professional and industry representatives, now named the Know AML Coalition, gathered to agree on how to mark AML World Awareness Day in 2017.

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The Fight AML campaign aims to improve education and support in order to empower the AML community in its fight against AML and it is the first of many Know AML awareness and education activities.

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More info on – http://www.know-aml.com

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