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We are learning about rare diseases: 28 days in February for 28 rare diagnosis: 

In February, the month that patients with rare diseases call it rare month, we will try to educate about 28 different rare diseases. The statistical data about rare diseases in Macedonia is not yet official as the registry is a work in progress. We estimate that there are over 2000 patients that face life with a rare disease in Macedonia with over 100 different diagnoses.

let’s try and learn the challenges and problems around diagnosis, treatment, disease management, access to orhpan drugs …

What RARE means?

Rare means to search for diagnosis from months to over 10 years, it means knowing that there is a treatment but it is not accessible in your country, it means that it is very expensive to have a disease, it means not knowing anyone in your country with the same disease, it means search for someone like you … Rare means when you ask your doctor about your diagnosis, he is searching on the internet to let you know what it is … Rare is when you have to explain what your disease is, to explain that you are not imagining pain, … rare means a day filled with struggle to finish your everyday activities, .. rare means to be one in thousands of people and when you find people with your disease you feel like you found a family … Rare is when you can’t plan your future. …

This is why Super Radio, Gordana Loleska and LIFE WITH CHALLENGES this February will share information about rare diseases in R. Macedonia. This is just hoping to learn more and be informed.

28 days in February for 28 rare diagnoses 

First time, Rare disease day was marked in 2008 on 29th of February. Now every year, the last day of February is Rare disease day.

Rare disease day is international campaign for raising awareness on rare disease. From 2008 until today, thousands of events are happening all around the world. It began as a EU event and now it is global, 90 countries from all over the world marked this day in 2018.

R, Macedonia for the first time, marked this day with an event in 2012.

The campaign for RDD is for the public, for the institutions, the patients, the organizations, the medical professionals, the researchers, the students .. everyone is welcome to join in …the more the better.

RDD is a possibility for the participants to be a part of the global call towards the policy makers, the researchers, the pharmaceutical companies, the medical professionals so that patients will be more involved in the research on rare diseases.

This years the theme of the events is – Connecting Health and Social services.

Also we are continuing with the campaign  #ShowYourRare for the social media. People from all over the world are painting their faces showing how rare they are for Rare Disease Day.

Join us!

 Download links:

 for video:

https://www.sendtransfer.com/download.php?id=e69a2e597d48220120c7a5c3d13ff610&email=3878382

Note: the link will be active 14 days from 29.01.2019

for radio:

https://wetransfer.com/downloads/7042c52bf627536d75735cfaf7f9619b20190129094458/d5b67070569419687398d3998af74c0220190129094459/7e72c9

Note: the link will be active 7 days from 29.01.2019

text and photo for web sites:

https://wetransfer.com/downloads/1e35b69305fc526f6efc90af8c3a253520190129092031/de5017cd328f0a33d239c1d979549f8620190129092031/cdf265

Note: the link will be active 7 days from 29.01.2019

Poster and logo from the project:

https://wetransfer.com/downloads/283cd36259b3cee25be06e27eecb11b220190129130536/e54aba71c4008233e381e6a4111d02d720190129130536/8077c0

Note: the link will be active 7 days from 29.01.2019

It is a pleasure to inform everyone that starting January, this year through the Help line for rare diseases of LIFE WITH CHALLENGES we are providing psychological and psycho-therapeutic support for families with rare diseases.

The HELP LINE is a project that we started since 2013 as a non-formal info line for families that face life with rare diseases. It is an open communication through telephone, Viber, Facebook, e-mail, face to face meetings, family gatherings … and much more … the help line is for informative support, for direction and support through the health and social system so that patients can get the services they need without spending a lot of time through the institutions.

From January, 2019 we signed agreement for cooperation with NEOKORTEX – Center for psychotherapy, psycho-diagnostics, training and education so that we can offer the following services: individual psycho-therapeutic sessions, partner therapy, psychological advice for parents, family therapy, psychological testing and other services needed for the families that face life with rare diseases.

Statement, Vesna Aleksovska, President of LIFE WITH CHALLENGES:

“Supporting the patients in the past ten years, we became aware that psychological support is very important not just for the patients but also for their families. Having a rare disease is not just a burden to the one person that has it, but to the whole family. This is why we decided, part of grant form the Foundation Trajche Mukaetov, that we received at the end of the last year, to be for free psychological and psycho-therapeutic services for the families that face life with rare diseases. In 2019, patients and families with rare diseases can directly contact Ivana Hadzivanova from NEOKORTEKS (psychologists, psychotherapists, educator +38975273768), they can schedule a meeting and get the needed support. We hope that the availability of this service and the guaranteed anonymity will contribute towards greater help and support for the families with rare diseases and for the improvement of their quality of life. Although we are starting with this project in Skopje, we have planned educational workshops for other cities so that further we can start cooperation with other professionals and make a network of support for the families with rare “

Statement, Ivana Hadzivanova, Psychologist, psychotherapist, NEOKORTEKS

“It is a great honor and happiness for me to start this cooperation with LIFE WITH CHALLENGES as an organization that I respect a lot. I am ready in this year, to give all my professional energy in order to improve the mental health and the psychological condition of the people and the families with rare diseases. I am happy to be a part of the support in overcoming the life challenges when you face a rare disease.”

2019 is the year in which LIFE WITH CHALLENGES is marking 10 years of its existence. It will be a year with a lot of news and events and new services for improving quality of life of people with rare diseases.  This is just a part of the news in the HELP LINE, soon, before Rare Disease Day, we will announce other news about services that will be provided through the HELP LINE in LIFE WITH CHALLENGES. But also we will have more news on regional cooperation with doctors and organizations from our region.

Vesna Aleksovska

President of the Association of citizens for rare diseases LIFE WITH CHALLENGES

Тel: +389 (0)70 70 54 46

E-mail: zivotsopredizvici@gmail.com 

Information about the association:

• http://challenges.mk/
• https://www.youtube.com/user/lifewithchallenges
• https://www.facebook.com/LifeWithChallengesi
• https://www.facebook.com/groups/312483895490987/
• https://twitter.com/ZivotPredizvici

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.“

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.

#ShowYourRare #rarediseaseday #MyRare #CureCMD

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:

Sincerely, 

Vesna Aleksovska

President of LIFE WITH CHALLENGES

Tel: +389 (0)70 70 54 46

E-mail: zivotsopredizvici@gmail.com ; vesna.stojmirova@gmail.com

Information about the association:

• http://challenges.mk/
• https://www.youtube.com/user/lifewithchallenges
• https://www.facebook.com/LifeWithChallengesi
• https://www.facebook.com/groups/312483895490987/
• https://twitter.com/ZivotPredizvici