News/Press Releases

The International Gaucher Day (1^st 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.

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.

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…

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

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.

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.

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.

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.“

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 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.

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.

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.

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

The Life With Challenges association, together with the National Alliance for Rare Diseases of the Republic of Macedonia, under the umbrella of the European Association for Rare Diseases – EURORDIS, celebrated the international Rare Diseases Day, February 28, 2017 this year as well under the motto “With Research, Possibilities are Limitless”. In addition, this year we are also focusing on parents of children with rare diseases and the difficulties and challenges they face. Their stories were on display in a poster presentation in the hall of the EU Info Center today and they were shared on social media.
After the new Law on Financing the Rare Diseases Program was passed in 2015, 21 new medicines were procured for approximately 12 rare disease diagnoses, which covered more than 150 patients. According to information available from the Ministry of Health’s public bids, the number of medicines in 2016 has increased by 29, which means that more diagnoses have been covered, so now the number of patients receiving medication has reached approximately 220. There are 46 primary diagnosis in the registry.
Statement by professor Aspazija Sofijanova, PhD, president of the National Commission for Rare Diseases:
As medical doctors we must be less emotional, however that’s not so in our case because we are in direct contact with sick children. When we save a child, it feels like we have saved the world, but when we lose a child, it feels like we have lost the world. This year we will continue to struggle for the patients with rare diseases, and the parents, the patients and the associations offer the greatest help in that struggle – if we join forces with the institutions, there is a lot that can be done. We know the issues. I just came from the clinic and I would like to say that Iskra says hi, that’s a child who has spinal muscular atrophy and who is still in intensive care at the clinic. I also know Daniel, who was helped a great deal by the US Embassy in Macedonia, that is Mrs. Mary Jo Wohlers. It is a new medicine, and we will try to find the financial means to bring it to Macedonia, like we bring medicines for other patients.

Изјава, Проф. Д–р. Аспазија Софијанова, Претседателот на Националната комисија за ретки болести

Statement by academician Momir Polenakovic, Macedonian Academy of Sciences and Arts (MASA):
Within MASA we have a small genetics and diagnostics center, but we also collaborate with other countries and we are trying to forge the way ahead in terms of education and to push forward in diagnostics, which is as important as prevention. Early diagnostics is essential for early therapy and for providing timely information to the patients, so that their life quality is improved. The collaboration with the Wilson Disease Association – Macedonia has already resulted in improvement in the education for diagnosing Wilson Disease as well, and they provided us with reagents through a donation. We hope that in the future we will have more funds for providing other reagents in order to boost the diagnosis of a larger number of rare diseases.

Statement by Rashela Mizrahi PhD, Ministry of Health of the Republic of Macedonia:
The rare diseases program was launched two years ago with the creation of the rare diseases registry and the increased financial support for medicine procurement. There are many issues in terms of diagnosis, classification and systematization. There’s a whole apparatus working in the background at the Ministry and the Rare Diseases Commission, where clinicians work pro bono for the wellbeing of the patients. We have also established criteria and requirements for entering the registry, some 400 patients have been registered with more than 46 diagnoses, and we already have medication for 220 patients.
Statement by Rebeka Jankovska Risteski, president of NARBM (National Alliance for Rare Diseases of the Republic of Macedonia):
This year we are focusing on patients who are yet to receive medicine. Such are patients who have spinal muscular atrophy, children whose only hope is a medicine approved by the American Food and Drugs Administration last year. Then we have the medicines for patients who have rare forms of cancer, such as the MDS patients – two patients who were donated the medicines have already shown signs of improvement in their wellbeing and life. Therefore we believe that innovative medication should be made available in order to allow for a good quality life for the patients and their families. Then we have the medicine for juvenile arthritis – only one of the three that exist is being procured. Finally we would ask the Health and Pension Insurance Fund of Macedonia (FZOM) not to forget that even in 2015-2016 they promised the patients suffering from Chrohn’s disease and ulcerative colitis they would provide them REMICADE. Of course, we would also like them to provide patients with medical aids and meet other needs when there are no medicines available. Our vision as an alliance is for nobody to be left behind.

Statement by Anja Bosilkova Antovska, vice-president of NARBM:
There is a great variety of rare diseases and anyone may contract them. We carried out research in collaboration with the Wilson Disease Association – Macedonia and we drafted some recommendations for changes in Macedonian legislation so that rare disease patients are not apprehensive of whether there will have a long-term therapy plan available or not. A national rare disease program and systematic, legal solutions must exist for us to ensure a future for the rare disease families.
Statement by Vesna Aleksovska, director of Life With Challenges:
No matter how much I speak I am bound to leave something out. On the one hand we are thankful for the understanding that the institutions have shown for us, rare disease patients, in the last two years, but on the other hand I must also say that there is a lot to be done, many people to be helped, and that we will always have new requests and new needs. The rare diseases are very unique, each one has a number of variations and each patient is a different story, with separate challenges, difficulties, issues, happiness and sorrow. Working together as part of the alliance I think that we can achieve much more, and I hope that we will be increasingly vocal and that our voice will be heard more and more. Each family deserves the best chance possible for a happy life. We will continue to meet up with the institutions, we will speak up in front of the media, we will get the public involved by organizing events… Each patient must be taken care of.

Other events around Macedonia

Bitola
This year the rare diseases awareness raising campaign began with an event in Bitola on February 24, at 10 a.m. in downtown Bitola, on Sirok Sokak, where with the support of the Hepar Centre for Citizens who have Rare Diseases the Life With Challenges Bitola organized a press-conference and distributed flyers downtown in order to raise public awareness for the rare diseases.

Ohrid

On February 28, 2017, at noon, a march began from the front yard of the Hristo Uzunov primary school. Some 200 students in a line marched along Pitu Guli street, and then along Jane Sandanski street, and then they joined forces with the students of the St. Clement of Ohrid secondary school and they continued together all the way to the Macedonia quay (in front of the Royal hotel). There, at 1 p.m., the students ran a cross race to the Ss. Cyril and Methodius monument. From there the students went to the city square, where they distributed information leaflets for rare diseases. On February 26 and 27, there were hiking activities organized as well, with the support of ZSH Avantura – Ohrid. The activities in Ohrid were also bolstered by the Animalija association, which supported the idea for rare disease awareness raising with the motto: “Adopt a pet, for some people that’s the only free therapy”. The event was organized by Gordana Loleska, a mother of a child suffering from Alport syndrome, with the support of the Ohrid Red Cross, the St. Clement of Ohrid secondary school, ZSH Avantura, the Animalija association and the citizens of Ohrid.

Prilep

On February 24, 2017, a group that distributed flyers for rare disease awareness raising joined the Prilep masquerade. There was also a public lecture for rare diseases. The event was organized by Jasmina Hristoska, an acromegaly patient, with the support of SLAP – Prilep.

Last year a member of the association for rare diseases Life with challenges, a mother with a child with Alport syndrome, Gordana Loleska, employed in the post office in Ohrid, started an initiative for creating a postal stamp with the logo of rare disease day to help in raising awareness for rare diseases in Macedonia. This initiative was supported by many medical professionals in Macedonia who send letter of support to the Direction for philately to the Director Mr. Elez Elezi.
We did an internet search and we realized that this kind of stamp will be first of its kind – dedicated to Rare Disease Day to all the Children with Rare Diseases and it is a great initiative for the Macedonian post office, an accomplishment on world level. This year the post accepted this initiative and we hope that the stamp will be ready for distribution for rare disease day 2017. The name of the stamp will be Children with rare disease.

The stamp will be promoted by the national alliance fir rare diseases of Macedonia and also by the post office. It is a great idea that came true … a nice way to promote awareness.. we hope that other countries will do this also.

We are very proud of Gordana Loleska who enthusiastically took this idea forward. We also want to say thank you to the general director of the post office Mr. Fadis Redzepi, to the director of the sector for philately Mr. Elez Elezi, to the director of the post office in Ohrid Mr. Sejfula Hani and to the council for philately at the post office of R. Macedonia, with its president Ms. Vasilevska Sonja.

For the 15th 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.

This year the Ohrid divers dedicated the decoration to the children with rare diseases in Macedonia. Goran Balevski said that this year they decided to sent a message to the public for support of the children with rare diseases.
This cooperation was made possible with the efforts of our member Gordana Loleska from Ohrid.