International Gaucher Day will be marked at the end of October, with an educational lecture for doctors and meeting for families. Details will follow after 20th October.
The citizen association for rare diseases “Life with Challenges” organizes The First Balkan Meeting for Alport Syndrome in Ohrid, Republic of Macedonia from 31st August to 2nd September. The event is organized by Gordana Loleska, Vesna Aleksovska and Velibor Tasich, MD. The event began with an opening addresses from a mother of a child with Alport syndrome, the Minister of Health and the Mayor of Ohrid Municipality.
Statement, Gordana Loleska, activist in LIFE WITH CHALLENGES, mother of a child with Alport syndrome, organizer of the conference:
I am glad that we have here present today institutions, patients and doctors, because together we can achieve more for the families that face a rare disease such as Alport Syndrome. I hope that the families will have the opportunity to talk and to sincerely ask about all they need to know about Alport syndrome in the course of these 3 days. As a mother of a child with Alport syndrome I know what it feels like when the world crashes upon you when you get diagnosis with which you do not know what to do because there is no cure. It remains for us to bear hope that there will be new clinical trials and medicines that will extend and improve life with Alport syndrome.
Statement, Venko Filipche, Minister of Health of R. Macedonia:
I believe that only in such meetings where all the concerned parties are present we can jointly do much more and get good results . Doctors and experts should always be at disposal to patients, as well as to institutions. We will try to improve the life of all patients, citizens of our country. We have started cooperating with the rare disease associations a year ago when we had meetings where all the problems and challenges were genuinely discussed. We have completed some of the tasks, and we are still working on others. The electronic registry has been completed, three new medicines have been procured. Now we are working on improving the diagnostic of rare diseases and procuring new medicines. At a meeting with the Minister of Finance we demanded higher budget for health care as well as for rare diseases. Also, we are working on a special fund with the Chamber of Commerce for creating additional means for medicines for rare diseases.
Statement: Konstantin Georgievski, Vice -Mayor of Ohrid
We are proud to host this Balkan meeting and we are here to support every process of cooperation. I am convinced that during these three days my respected colleagues and experts will offer knowledge and new information that patients and families with Alport Syndrome will find useful and at the same time they will exchange experiences among themselves for further improvement of the treatment of Alport Syndrome in Macedonia. I wish you a pleasant stay in our most beautiful city, Ohrid.
Statement: Vesna Aleksovska, President of the association:
When I first met Gordana Loleska I knew that she was a mother who would fight not only against the disease of her child but also for all the children with rare diseases and she has made it. It is with insurmountable enthusiasm that Ms. Loleska has organized many events around Ohrid to raise public awareness on rare diseases and she has also succeeded to have a post stamp created for rare diseases. I hope that other families will also be encouraged to demand improved quality of life because all citizens deserve a chance for a better life. The Alport Syndrome is a disease for which there is no cure at present; but researchers are carried out and I hope that when it is approved the same will be soon available with us. We must strive towards systematic, long-term solutions that will bring to improve the access to early diagnosis, early treatment and care, and control and follow-up of diseases regardless if they are rare or common.
The present situation with rare diseases in Macedonia
With the creation of the registry and with the increase of finances in the rare disease programme in 2015 and 2016 the procurement of over 29 medicines for 15 different diagnosis was enabled, medicines that until then were not available to patients with rare diseases . 2017 was a year when nothing happened regarding rare diseases. In 2018 we got the electronic registry for rare diseases that should alleviate the registration and follow-up of patients as well as the follow up of the quantity of medicines. This year finally after 7 months we have received 3 new medicines in the rare disease programme. We appeal that the tender procedures are shortened (7 months is really an unexpectedly long period of time for a tender procedure). The resolution of the lack of medicines for rare and other diseases with emergency tender procedures is not the long term solution we desire. The lack of medicines and expecting procurement is an additional stress for both patients and families . We expect that medicines are procured for Spinal Muscular Atrophy as promised and oral therapy for Gaucher patients. Additionally, medicines are needed for pulmonary fibrosis, tablets Fludrocortison are needed for congenital adrenal hyperplasia, for Duchenne and Becker muscular dystrophy and others. There always new diagnosis and there is also research and new medicines are being approved in the EU and USA .
From the HIFM we are still waiting for approval for reimbursement for special bandages and band aids for Epidermolisis Bulosa these were promised back in 2016 in February. Also we hope that HIFM will have understanding to put breathing machines on the list of orthopedic aids (for patients who experience breathing aparatus failure and who cannot breathe independently).
Of course, the priority remains for diagnosis, for which still there isn’t reimbursement from HIFM or from the Ministry of Health and we expect that this will be remedied soon. In communication with MASA and the MH we hope that the financial obstacles are soon overcome for receiving diagnosis in Macedonia and abroad.
We are grateful to everyone who has supported us so far and we continue the cooperation in future . We hope that as an association we will contribute towards the future of people with rare diseases so that is the future that they desire.
Program for the First Balkan Meeting of Families with Alport Syndrome and Experts
Ohrid, Macedonia, 31 August-2 September 2018
Organizational board: Prof. D-r Velibor Tasic, Vesna Aleksovska, Gordana Loleska
31 August, Friday, 2018
- Arrival of participants until 13.00
- 13.00 – 14.00 – Lunch
- 15.00 – 15.10 Vesna Aleksovska, Gordana Loleska: Opening Remarks
- 15.10 – 15.30 Venko Filipce, Minister of Health and Jovan Stojanoski, Mayor of Ohrid
- 15.30 – 15.50 Liesbeth Siderius: Rare Diseases in low economy countries – challenges and opportunities
- 15.50 – 16.00 Vesna Aleksovska: Rare diseases in R. Macedonia – Progress of the rare disease program from 2009 to 2018
- 16.00 – 16.30 Aleksandra Jancevska, Velibor Tasic, Liljana Tasevska R’mus: Basic on genetic testing
- 16.30 – 17.00 – Coffee break
- 17.00 – 17.40 Julia Höfele– Genetics of Alport syndrome – Molecular results of Macedonian patients
- 17.40 – 18.00 Patrick Walker Alport UK: Alport Syndrome Alliance: effort to build an international collaborative
- 18.00 – 18.20 – Coffee break
- 18.20 – 18.40 Dusan Miljkovic: Alport syndrome in Serbia
- 18.40 – 19.00 Danko Milosevic: Alport syndrome in Croatia
- 19.30 – 21.30 – Dinner
1 September, Saturday, 2018
- 8.00 – 9.00 – Breakfast
- 9.00 – 9.30 – Meet the expert Julia Hoefele: Diagnostic challenges in Alport syndrome
- 9.30 – 10.00 Meet the expert Liesbeth Siderius: How patients’ organization work in West Europe
- 10.00 – 10.10 Meet the expert Velibor Tasic: Is familiar benign hematuria indeed benign?
- 10.10 – 10.40 Meet the expert Tatjana Zorcec: Psycological support to Alport families
- 10.40 – 11.00 Ana Momirovska: Overview of first Alport results using molecular testing in Republic of Macedonia
- 11.00 – 11.30 – Coffee break
- 11.30 – 11.50 Nevenka Laban Guceva: Ophtalmologic changes in patients with Alport syndrome.
- 11.50 – 12.10 Irena Duma: Audiologic changes in Alport Syndrome
- 12.10 – 12.30 Vojislav Radulov: Hearing devices (technical aspects)
- 12.30 – 13.00 Tatjana Zorcec: Psychological profile of children with chronic kidney disease and Alport syndrome
- 14.00 – 14.30 – Lunch
- 14.30 – 14.50 Danka Pokrajac : Alport syndrome in Bosnia and Herzegovina
- 14.50 – 15.10 Velibor Tasic: Alport syndrome in Macedonia
- 15.10 – 15.30 Galija Zlatanova: Alport syndrome in Bulgaria
- 15.30 – 15.45 Jovan Neskovski: Report on a large Alport pedigree from Gostivar
- 15.45 – 16.10 Irena Busljetic: Transplantation in Alport syndrome
- 16.10 – 16.30 Association NEFRON: Importance of organ donation
- 16.30 – 17.00 – Coffee break
- 17.00 – 17.20 Personal story 1: Our experience on participation in the Early Protect Study
- 17.20 – 17.40 Personal story 2: After loss of the kidney graft
- 17.40 – 18.00 Personal story 3: Successful kidney transplantation
2 September, Sunday, 2018
- 8.00 – 9.00 – Breakfast
- 9.00 – 9.20 – Gordana Loleska: Clinical trials and orphan drugs for Alport’s – are they available for Macedonian patients
- 9.20-9.40 Natasa Stajic& Jovana Punik _ Alport syndrome-our experience at the Institute for Mother and Child Health Belgrade
- 9.40 –-10.00 Gordana Lomic: Alport syndrome-our experience at the University Children’s Hosptal, Belgrade
- 10.00 – 11.00 All participants: Conclusions and vision for the future
- 11.00 – departure of participants
On 3rd of June, on Ohird Running, rare diseases were present as 50 people were running for raising awareness about rare diseases. The message is clear – we want timely and free diagnosis, we want access to innovative medicines, we want access to appropriate care, we want a better life!
This activity was organized by Gordana Loleska, a member and activist of LIFE WITH CHALLENGES. Also we had support with the municipality of Ohrid.
This event was a promotional and there were a few races going on during the day, some professional and some recreational.
Statement, Gordana Loleska, activist of LIFE WITH CHALLENGES
„On this marathon we have professional running for rare diseases, but also parents and patients themselves are running for better life. The citizens of Ohrid supported our cause and contributet towards raising awareness about the problems of people with rare diseases. We also have the Minister for Health, Venko Filipce, running for us and the Minister for finance – Dragan Tevdovski, also we had the state secretary for external affairs – Viktor Dimovski.”
Statement, Vesna Aleksovska, president of LIFE WITH CHALLENGES
„Gordana is one of our most active members, and she organized many events for raising awareness on rare diseases. This is one of those events where we share with the media our problems.
Rare families help and support each other, as we are aware of the burden of the rare disease that we have to care for the rest of our lives. There are some steps towards improvement of care and treatment. In 2009 the minister Bujar Osmani was the one who made a separate program for rare diseases. In 2015 the Minister Nikola Todorov added finance to the program and 30 new medicines were provided for 18 diagnosis. He also started the registry for rare diseases. In 2018, the Minister Venko Filipce added 3 new drugs, and we are expecting more until the end of the year. He also started to transform the registry into an electronic one for easier use.
We all deserve better health system and health services. As an association we will continue to cooperate with other organizations and institutions towards long term solutions for better health care, treatment and services.“
The event was organized in cooperation with:
Охрид трчаТ – Ohrid Running
Our activity is supported by:
Genzyme Sanofi Aventis, Celgene International, Pfizer, Hoffman La Roche, Biomarin, Medis, Novartis, Municipality of Ohrid.
The Association of citizens for rare diseases LIFE WITH CHALLENGES continues with the tradition and this year is participating at Skopje Marathon together with the group Skopje Night Running. The motto as the previous years is Running for better life.
On 6th of May, 40 participants on 21 and 42 kilometers will run for rare diseases. Our voice is stronger when we are together.
This activity is dedicated for raising awareness on rare diseases in R. Macedonia. Families with rare diseases face different challenges in their everyday life. We are thankful to everyone who supported this activity from 2013 onward. We hope to further contribute towards the future of people with rare diseases.
Statement: Vesna Aleksovska, President of LIFE WITH CAHALLEGNES
„After the start of the registry for rare diseases and the increase of finance for provision of drugs for rare diseases in 2015, we had around 30 medicines supplied for over 18 diagnosis. The Minister of Health Venko Filipce, this year on rare disease day promised 3 new medicines and he kept the promise as we can see form the new tender for rare diseases that is ongoing at the moment.
There is still a need for medicines for newly registered patients and new medicines such as for Pulmonary Fibrosis, Juvenile Arthritis and other rheumatological diseases, Becker and Duchene Muscular Distrophy. We also have a request for oral therapy for Gaucher diseases as it will improve quality of life of patients who can transfer from infusion every 2 weeks on a pill every day.
From the Health Insurance Fund we still expect refund for special bandages for Epidermosilis Bulosa that were promised in 2016 in February.
We are also very concerned regarding diagnosis.In the past 2 months we had 3 cases (a baby of 4 months, a child of 10 years and an adult) with difficulties to get the diagnosis. Although they had tests in Macedonia for different diagnosis nothing was confirmed. To get tests in other countries it costs from 500 to 5000 EUR depending on the tests needed. Refund is not available for diagnosis in Macedonia. Although the HIF promised to get a new regulative about this nothing is happening. Without a diagnosis life is very difficult since you have no idea what are you fighting with and how to treat and manage the disease.
The association will continue to communicate with the institutions to ensure that in future there will be appropriate health and social services for the families that face life with rare diseases. Every person deserves a chance for better life. Only together we can improve all of our lives.“
In the past 3 years we have a functional help line for patients and families with rare diseases. It is not an official free number you can call but it is a hard work to be done. We usually communicate through telephone, e-mail, Facebook page, Facebook group .
Usually we have one or 2 calls on a daily basis, not just in work days but also on weekends and holidays. Sometimes we get calls from people who face other kinds of diseases and we try to direct them towards reliable organizations.
With a goal to help more we are in communication with organizations from the region like Croatia, Serbia, Monte Negro, Bulgaria, Bosnia and Herzegovina. We are all enthusiastic and persistent in our work to support patients. We also organize regional conferences, meetings, we share best practices, contacts from medical professionals, we advise and support each other to achieve more for the families who face rare diseases.
The request for help are usually those bellow:
- Do I have a rare disease or just ordinary one?
- Where can find information?
- Can you translate information for my diseases?
- Is there a medicine?
- Is there any other treatment available or not?
- How should I be registered to get a drug?
- Do I have the right to social aid?
- Do you know someone with this diseases?
- Can you connect me with others like me?
- Do you know doctors that can explain about my disease?
- Which institution should I contact?
- How to write a letter to institution?
- Can you take my documents to the institutions in my name?
- Can you help me gathering documentation?
- Is stem cells treatment useful?
- Who in Health insurance is responsible for rare diseases?
- Who in Ministry of health should I contact?
- Is my special food for my disease refunded?
- How can I get refund?
- Is the clinic responsible for provision of my drugs?
- Who decides if I get a drug or not?
We try to answer immediately if we can or in 2-3 days. If do not get an answer until than, we call and say that we need more time. If we are still not able to help we try to connect and communicate with other organizations and institutions.
Also through the help line we managed to help in foundation of 3 new associations.
We gather patients with the same disease, they have a meeting and decide on further actions. Of course we helped them in documentation and registration, we help in project writing, in letters to institutions, we give contacts, we arrange meetings and other similar support. For now we helped, Wilson, Thalassemia, and Spinal Muscular Atrophy.
Sometime they do not form an association but an informal group within the association Life with challenges.
We also invite new organizations to join the national alliance for rare diseases of R. Macedonia. We think that cooperation is very important if we want to achieve our mission and goals.
This year, the Association of citizens for rare diseases LIFE WITH CHALLENGES, marked 28th of February , RDD, wth many events in many cities: Bitola, Valandovo, Ohrid, Strumica, Skopje, Gostivar …
Rare disease day is international campaign for raising awareness on rare diseases. From 2008, there have been more than 1000 events around the world. The campaign started as an European event and than it became global. The subject for 201 is research. This day is a possibility for participants all around the world to be a part of the global call towards the creators of politics, researchers, companies and health professionals.
Statement, Vesna Aleksovska, president of LIFE WITH CHALLENGES:
Rare disease day, for us, patients and families with rare diseases, is a day to remind the public about what has been done for us and what is needed in the future so we can have a better quality of life. One of the problems is of course access to new innovative drugs. From 2015 to 2017 there has been 30 new drugs for around 18 diagnosis. Now in 2018 we will get 2 new drugs, one for aplastic anemia and one for Familial Amyloid polyneuropathy. We still have a long list including spinal muscular atrophy, pulmonary fibrosis, systemic sclerosis, muscular dystrophy Duchen and Becker, rare cancer as MDS and other in hematology, rare cancers in oncology … we also hope for oral therapy to be available for Gaucher patients, and for juvenile arthritis there are only 2 drugs available so we are trying to get one more as there are around 3 patients who are buying the drug themselves.
From the social aspect, we expect new social services and training for employees in social centers so that they are aware of the individuality and the difficulty of the rare diagnosis. On our list is also the need for improvement of diagnosis as we ask from the Health insurance fund to provide refund for diagnosis of rare diseases in the country, and if it is not possible than to have a possibility to send appropriate material abroad in laboratories that Macedonia is cooperating with. Without early diagnosis, early treatment is not possible and the quality of life is very low.
To be rare means to search for diagnosis from couple of months to over 10 years, rare means to know that somewhere else in your neighbor country there is a treatment for your disease but it is not accessible to you in your own country. Rare is when you can’t find a person with the same disease in your own city, country, region and you have to search the world to find a person just like you. Rare is when you ask your doctor about your disease, and he starts searching the internet. Rare is when you have to explain your condition to everyone and still no one will understand. Rare is when you fight for every day, when you are happy doing your everyday chores, rare is when you are one in thousands of people and when you find people like you, you feel like you found your other family, rare id when it is not possible for you to plan your future … because you are rare … you are not like the others …
From 20 to 25 February, in Gostivar, е оthere was an event organized by Josif Mishevski and Nebojsha Petreski. The first picture for support came from the mayor of Gostivar, Arben Taravari. We are thankful for the support of Procam studio and the city of Gostivar.
On 26th of February, in Bitola, Magnolija square, with the support of the city of Bitola, Vino bar Bure and Hepar centre Bitola we organized an event for raising awareness on rare diseases and a press conference. We are thankful to the high school Jane Sandanski and Josip Boz Tito for the support.
With this kind of campaign we showed that everyone an join in and give support to families that face rare diseases.
On 28th of February in Ohird , Gordana Loleska organized many events for raising awareness. Middle schools and high schools from Ohrid all joined to raise awareness about rare diseases. On the 28th there was a march for rare diseases with many citizens participating and sharing care.
Also there was a promotion of a song for rare diseases – We are all the same, that was performed by talents from the show Ohrid Sueprstar. This song is recorded in the studio Kitrozan, the music is from Jovica Karalievski and the text is from Sasho Mitan. The arrangement is from Jovica Karalievski and Dmiche Kitrozoski.
Helen Doron Center also participated in the campaign to support their student Iva Hadjimanova who is fighting with Congenital Muscular Dystrophy. There is no cure or treatment for this disease yet. Also her friends from school joined to support Iva.
Strumica and Valandovo also joined for rare disease day under the leadreship of Ljubica Prodanova.
The school Jane Sandanski from Strumica supported families with rare diseases.
The children from Valandovo also gave their support.
We also got some support from our prime minister – Zoran Zaev.
On 28th of February, in Skopje in organization of the National Alliance for rare diseases of R. Macedonia there was a press conference in the EU info center. We tried to remind the institutions what have they done until today and what is needed so we can have a better future.
Thanks to everyone who joined in the support for the families that face rare diseases.
All events were supported by:
President of LIFE WITH CHALLENGES
Tel: +389 (0)70 70 54 46
Information about the association:
The Association of citizens for rare diseases LIFE WITH CHALLENGES with the help of members, other organizations and volunteers is organizing a few events in different cities in Macedonia.
On the 24th of February together with Hepar centar Bitola, we are having a public event in the center of the city. Find us from 11 to 13.00h.
On the 28th of February in Ohrid, Gordana Loleska with the help of supporters and cooperation from many good people from Ohrid is having an event, please search and read more on facebook – https://www.facebook.com/Retki-Bolesti-Ohrid-390287864742066/
On the 28th of February we are together at a press conference with the National Alliance of R. Macedonia in Skopje, EU info center, 10.00h.
We will soon publish info on other cities (Gostivar, Valandovo, Demir Kapija).
Mark this day with us – read more how – Флаер – Ден на ретки болести 2018
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.