март 2021

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За Здружението Живот со Предизвици

Association of citizens for rare diseases LIFE WITH CHALLENGES Bitola

Our organization is founded with the help and support by the National Alliance of people with rare diseases of Bulgaria. The first meeting of families and doctors connected to rare diseases in Macedonia was organized by Bulgaria in Ohrid, Macedonia, in June, 2009.

Since than the patients in Macedonia decided to form their own organization and fight for their rights. This is how Life With Challenges was born.

In the next 3 years we were gathering members and learning how to manage and grow into a strong patient organization.

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Our Vision and Mission

Vision

Our vision is achieving the best possible quality of life of patients and families with rare diseases, through best possible social and health services.

Mission

Our mission is developing solutions and politics through implementation of activities for improving quality of life of patients and families with rare diseases. The goal of Life With Challenges is to help and support patients and families that face life with rare diseases. Our mission is realized through the following activities:

  • Helping and informing people with rare diseases, creating and sustaining communication between patients
  • Raising awareness in society through education about the problems of patients with rare diseases
  • Organization of public events, congresses and meetings with a goal to educate and inform
  • Support of research and education about rare diseases
  • Organization of info centres for people with rare diseases
  • Organization of cultural events for raising public awareness
  • Distribution and printing of info-materials about rare diseases
  • Social rehabilitation for people with rare diseases
  • Finding funds for treatment of patients
  • Documentation of patients with rare diseases

Important Issues

  • Advocating for patients’ rights.
  • Raising awareness in society about rare diseases, about physical and psychological consequences.
  • Helping and informing people with rare diseases.
  • Helping doctors to get information about diagnostics, treatment and rehabilitation of rare diseases.
  • Communication with other organizations about rare diseases in R. Macedonia and in the world.
  • Communication with health institutions in R. Macedonia for better treatment of people with rare diseases.

What are we doing?

  • Negotiating with the Ministry of Health
  • Informing the President of the Government and the Minister of Finance about the importance of treatment for patients with rare diseases
  • Raising awareness to get more support from the people in Macedonia
  • Cooperating with the media to raise the level of awareness about our problems
  • Cooperating with other patient organizations to act together about important patient issues

Rare diseases in the organization

The association of citizens for rare diseases Life With Challenges, is founded by patients and parents that face with life with Gaucher. Later in the association joined patients with Allagile Syndrome, PKU and others.

The association is representing patients and parents with rare diseases that are members in the association. Rare diseases represented by the association are: Gaucher, Phenylkeotnuria, Allagile Syndrome,  Tyrosinemia, Lenox Gastaut Syndrome, Congenital Muscular Dis trophy,  Congenital Cataract, Epydermolysis Bulosa, Carnitine plamitolitransferase deficiency, Pulmonary fibrosis, Adrenomyeloneuropathy, Williams Syndrome, RET Syndrome, Amyotropihi lateral sclerosis – Lou Gehrig’s diseases, Myasthenia Gravis , Huntington disease, Porphyria, malignant paraganglioma feohromocitom tumor, arthogryposis multiplex congenital, Fibrodysplasia ossificans progressiva (FOP), Multiple myeloma, Myelodysplastic syndrome, MPS 4 – Morqio Syndrome,   Strümpell disease – Hereditary spastic paraplegia, Takayasu arteritis, Primary ciliary dyskinesia, Kartagener type, Mastocytosis, Juvenile dermatomyositis, Friedreich ataxia , Acute intermittent porphyria, Cystinuria, Stargart, Lowe Syndrom, Dextocardia Situs inversus, Heurofibramatozis, Phemgus Vulgaris, Wegener’s Granulomatosis, Ehlers – Danhlos Syndrom, Alport Syndrom, Polimiozitis, Mastocitozis, Burgada Syndrom, Fanconi, Niemann Pick C, Chronic inflammatory demyelinating polyneuropathy, Carney Complex,  Erythrodermia Ichthyosiformis congenita, Guillain Barreov Sindrom, Malignant Melanoma, Rendu-Osler-Weber disease -hereditary hemorrhagic telangiectasia(HHT), Systemic vasculitis-Sy.Churg-Strauss, Addison disease,  …  and many others that will join us and ask for help and support.

The association does not represent rare diseases that are not registered members in the association.

Some groups of patients have their own associations and we encourage and support other groups to form associations since we think it is important for each disease to have association or at least a support group.

The association also is a member of the National Alliance for Rare Diseases of R. Macedonia (14 organizations representing different rare diseases and patients rights).

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What have we accomplished?

2009:

  • The association started with 4 families with Gaucher disease
  • Rare disease programme included 1 medicine, 1 disease, 3 patients
  • Difficult access to communication with institutions and health professionals
  • Rare diseases were marginalised and forgotten – invisible in the health system
  • There was no information about rare diseases available in the Macedonian language

2021:

  • The association supports 400 families with 150 different rare diseases
  • Rare disease programme includes 35 medicines, 24 diseases, 180 patients
  • Seat at the table with the institutions
  • Partners with health professionals
  • Providing information, education and psychological support for families
  • Supporting regional database for rare diseases

 

Program for rare diseases at the Ministry of Health of Macedonia

The first program for rare diseases at the Ministry of health is from the year 2009 and it included 3 patients with MPS 2 – Hunter syndrome.

There were no further changes until 2015. From 2015 there is a register for RD at the Ministry of Health – more about that can be found in the program for RD from 2016. And in the years to follow the program increases in the number of medicines, the number of treated diagnoses and the number of patients, of course, the funding increases also.

The New Programme of the Ministry of Health for 2016 is as it follows:

  1. Diseases which can be treated with medicines;
  2. Diseases which are rare, but for which there is no treatment but which are important for the diagnostic and planning.

In the registry of patients with rare diseases are included solely the diseases listed in the ORPHAN list of rare disease – reviewed in July 2014

http://www.orpha.net/orphacom/cahiers/docs/GB/List_of_rare_diseases_in_alphabetical_order.pdf
In the Registry of rare disease patients are only included diseases which affect one in 2000 persons, but which do not exceed 20 affected at the level of Republic of Macedonia
Medicines are provided or the patients who are registered in the Registry of rare diseases through this programme. The provided medicines are necessary for the patients and represent an only choice of treatment of the rare disease, and they are not on the positive list of medicines

For the realization of this programme, treatment of rare diseases with therapy and medicines which have not been previously applied in rare disease treatment, for the provision of the necessary equipment for diagnosis of rare diseases, providing education for the staff who diagnoses and treats the rare disease patients, it is expected that in 2016 total funds in the amount of 203.000.000,00 denars will be needed.

  • Treatment of patients with a rare disease regardless of insurance status 197.000.000.00
  • Providing the necessary equipment for diagnosis and treatment of rare diseases 4.000.000.00
  • Providing education of the staff who diagnoses/treats the rare disease patients 2.000.000.00

We hope that changes will be made in the program for 2017 since as patients organizations we all reacted to the limitation of the number of patients (20 per diagnosis). And we reacted to the lack of further criteria and step by step explanation of how patients can be registered and get the needed treatment.

Rare disease registry in Macedonia

The register for rare diseases is consisted of collected data for all diagnosed cases of people with rare diseases in a population.

The registration is a process of systematic collection and data analysis so that it can provide information on the number of rare diseases and the number of people affected by them.

In Macedonia the register for rare disease is at the Ministry of Health. Patients need to send a request with appropriate diagnostic information so that they can be included in the registry. Also doctors can send information about patients so that they can be included at the registry.

The commission for rare disease is consisted from doctors from the clinic centre in Skopje. They gather to discuss about registering patients in the rare disease registry and further they discuss about the possible treatment and tis provision to the patients who need it.

For now the Program for rare diseases has limitation – it says that treatment will be provided to patients with rare diseases (where rare diseases are those 1 in 2000 people as from the list of www.orpha.net , but only if they are not more than 20 in R. Macedonia and have no treatment at all from others like from the Health Insurance Fund or from the Clinics). We hope that this limitation will go away and that all patients will get treatment. We also hope that drugs will be provided in a timely manner so that patients won’t be left without therapy for long periods of time (3 months) because of administration procedures.

In 2017 the Health Insurance Fund announced that they will cover diagnosis for patients when they can not get a diagnosis in the country in time of 6 months which is the same as the law in Serbia and we proposed it to the institutions right after we saw it was working in Serbia. We are very happy about this and we hope it will help families facing rare diseases.

All these accomplishments are made with cooperation with other rare disease organizations in the National Alliance for rare diseases of R. Macedonia.

Rare disease awareness

Rare disease day

We started marking rare disease day since 2012. In the past 2 years we are marking the day together with the organizations from the National Alliance for Rare Diseases of R. Macedonia.

Every year we manage to organize more events for raising public awareness with the help of our members and with cooperation with other organizations.

In 2014 we got the support from the wife of the USA ambassador in Macedonia Ms. Mary Jo Wholers and in 2015 and 2016 we had the support of the First Lady of Macedonia – Ms. Maja Ivanova.

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The part of “Life With Challenges” in Rare Disease Day, 2016 which we are very proud of was a promotion of the study for rare diseases that was realized in 2015 and can be downloaded at the following link – .

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Poster from the study was presented at ECRD 2016.

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We are proud to say that Rare diseases get more attention in the media and at the institutions in R. Macedonia. We hope that more events will contribute towards acceptance from the public and acknowledgment from the institutions.

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In 2016 we managed to organize events in Bitola with the help of Hepar Centre Bitola, in Prilep with the support of Jasminka Hristoska and in Ohrid with the support of Gordana Loleska and the Red Cross from Ohrid.

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Other important activities

Postal stamp for rare diseases

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.

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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.

Rare Disease Day Flag under water for New Year, 25 December, 2016, Ohrid, Macedonia

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Climbing the highest mountain in Western Europe – Mont Blank in France in support for rare diseases in Macedonia

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Climbing Korab, 4th of September, 2016

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Skopje Marathon – Running for rare diseases (from 2013 to 2016 and we will continue in 2017)

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Round table on rare cancers, 28th of October, 2016, Skopje, Macedonia with support from Serbia and Bosnia and Herzegovina

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Cooperation with doctors and researchersFIFTH MEETING OF SEE FOR RARE DISEASES, ON 12 NOVEMBER, 2016

The Macedonian Academy for science and art had the opportunity to organize the fifth meeting of SEE for rare diseases, on 12th November, 2016.

In the organizational committee of this meeting are: Momir Polenakovic, President, Zoran Gucev, Secretary, Nada Pop-Jordanova, Ilija Filipche, Zivko Popov, Velibor Tasic,Aspazija Sofijanova, Vesna Aleksovska, Dijana Plaseska Karanfilska

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Cooperation with others and membership in alliances

Internationally are actively participating in the board of directors of the European Gaucher Alliance – EGA, in the Drug Information, Transparency and Access Task Force in EURORDIS, and we are members of several organizations internationally and nationally: European Gaucher Alliance, EURORDIS, International Pompe Alliance, MDS Alliance, International Alliance of Patients Organizations, National Alliance for Rare Diseases of R. Macedonia,  Alliance for patient organizations – APO in Macedonia, an organization that is working on helping patients and families that face cancer. We also cooperate with organizations from the Balkan countries from Serbia, Croatia, Bulgaria, Bosnia and Herzegovina, Albania, Monte Negro, Kosovo, Slovenia.

Why do we think that cooperation is important?

  • Sharing knowledge in patient advocacy.
  • Sharing tools and best practices with patient organizations.
  • Learning how other organizations in the world accomplish their goals.
  • Getting support in policy development.
  • Getting support and new ideas for activities about raising public and institutional awareness about the problems and challenges of the patients and families.
  • Access to workshops, meetings, seminars and training on subjects important for development of strong patient advocates.
  • Access to new information of research and development of new medicines, new policies and new ways to help and support patients

Some pictures from conferences:

Second regional meeting of Gaucher patients and first regional meeting for lysosomal diseases  Sarajevo, Bosnia and Herzegovina,  5-7 April, 2013

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Second Balkan Conference for rare diseases – “Better communication – better treatment“, 20 – 22 April, 2013, Sofia, Bulgaria

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EURORDIS Membership Meeting, May, 2013, Dubrovnik, Croatia

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Patient Meeting Bulgaria – Macedonia, Skopje, 7 September, 2013

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NORBS – National Plan Conference, Belgrade, Serbia, 5-7 December, 2013

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DITA Task Force Meeting (Drug Information, Transparency and Access), London, UK, 8-10 December, 2013

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EUPATI – European patients academy on therapeutic innovation – 2014 – 2015

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Bulgaria – Macedonia Meeting, Kustendil, Bulgaria, 1-3 May, 2015

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Ден на ретки болести во Битола 2021

Со помош на Хепар центар Битола, Општина Битола, клубот Интеракт од Битола и гимназијата Јосип Броз Тито од Битола, здружението ЖИВОТ СО ПРЕДИЗВИЦИ организираше повеќе настани за подигнување на јавната свест за ретките болести. Во активностите се вклучија и повеќе училишта и индивидуи кои ја дадоа својата поддршка за семејствата со ретки болести.

Активност во центар на Битола, делење маски, боење раце и споделување информации за ретки

Активност на Широк Сокак, Битола, делење на раце од хартија во боја, во поддршка на ретките болести

Осветлување на Општина Битола во боите на ретките болести

Едукативна дискусија за ретки болести и споделување на приказни на пациенти од Битола

 

Со моќни пораки упатени до децата со ретки болести, учениците по француски и италијански јазик од ОУ Св.Климент Охридски-Битола во соработка со учениците од Гимназијата Јосип Броз Тито-Битола, го одбележаа Денот на ретките болести, во рамките на отворен час за воннаставна активност. Целта на овој отворен час беше да се подигне јавната свест за ретките болести, како и за предизвиците со кои се соочуваат децата пациенти. Учениците испратија виртуелни балони за да дадат поддршка за нивните соученици со ретки болести.
Les bons amis t’aident à retrouver ton sourire, ton espoir et ton courage. Добрите пријатели ќе ти помогнат да ја вратиш твојата насмевка, надеж, храброст.
Ogni bambino ha diritto di essere sano.Секое дете има право да биде здраво.
Rêver seul ne reste qu’un rêve ! Rêver ensemble devient la réalité. Ако сонуваме сами, тоа е само сон. Ако сонуваме заедно, тоа станува реалност.
SIAMO TANTI, SIAMO FORTI, SIAMO RARI. Многу сме, силни сме, ретки сме.
Qui est en bonne santé, est riche sans le savoir.Оној што е здрав, е исто така богат, без да го знае тоа.
L’amore vince tutto! Љубовта победува сè!
Etre rare, c’est être fort. Да се биде редок, тоа значи да се биде силен!

“Тодор Ангелески” блесна во боите на ретките болест во знак на поддршка на луѓето кои се борат со нив

Сите активности на ЖИВОТ СО ПРЕДИЗВИЦИ се поддржани од:


Ден на ретки болести Скопје, 2021

Промоција на поштенска марка за ретки болести во Скопје. Во месецот на ретки болести заедно со пошта на Северна Македонија организиравме промоција на поштенска марка за ретки болести. Првата Поштенска марка која се објави беше за деца со ретки болести, втората за Алпорт синдром и сега е третата по ред за болест на Гоше. Наредната веќе е извлечена од 100 болести и ќе ја објавиме во 2022 година. Прес конференцијата е достапна на видеото подолу. Оваа иницијатива е на Гордана Лолеска.
Учествувавме со говор на предавањата организирани од  Македонската Медицинска Студентска Асоцијација посветени за едукација за ретки болести.
 
Петта година по ред во ООУ Димитар Поп Георхиев- Беровски- Хром се одбележува месецот на Ретките Болести.

Оваа година се одбележи со учениците од 2г и 7г одд., заедно со одд.наставник

Gordana N. Trajkoska

и Евгенија Малчов, во соработка со дефектологот Despina Kostovska, со нашиот пациент Јане Велковски и неговите другарчиња,под мотото: Сите сме еднакви!❣

Ретко е да си редок💜💙🧡 #RareDiseaseDay
Ден на ретки во училиштето на малиот пациент со ретка болест МПС 4

Сите активности на ЖИВОТ СО ПРЕДИЗВИЦИ се поддржани од:


Ден на ретки болести во медиумите 2021

Alsat Tv show on health/ Алсат емисија за здравје

Дополнителни линкови до објави во медиуми:

  1. https://mia.mk/gi-zapoznavame-retkite-bolesti-28-dena-vo-fevruari-so-28-retki-di-agnozi/
  2. https://opserver.mk/makedonija/gi-zapoznavame-retkite-bolesti-28-dena-vo-fevruari-so-28-retki-dijagnozi-2/
  3. https://fokus.mk/gi-zapoznavame-retkite-bolesti-2021-28-dena-vo-fevruari-so-28-retki-dijagnozi-2/
  4. https://debrca.gov.mk/archives/4873
  5. https://ohrid.gov.mk/%D0%BE%D1%85%D1%80%D0%B8%D0%B4-%D0%B1%D0%BB%D0%B5%D1%81%D0%BD%D0%B0-%D0%B2%D0%BE-%D0%B1%D0%BE%D0%B8%D1%82%D0%B5-%D0%BD%D0%B0-%D1%80%D0%B5%D1%82%D0%BA%D0%B8%D1%82%D0%B5-%D0%B1%D0%BE%D0%BB%D0%B5%D1%81/
  6. https://www.slobodenpecat.mk/naczionalna-kampana-gi-zapoznavame-retkite-bolesti-fevruari-mesecz-so-28-dena-i-28-retki-dijagnozi/
  7. https://licevlice.mk/doza-vesti/articles/191
  8. https://kanal5.com.mk/gi-zapoznavame-retkite-bolesti-28-dena-vo-fevruari-so-28-retki-dijagnozi/a458971
  9. https://www.radiomof.mk/foto-ohrid-bleska-vo-boite-na-retkite-bolesti/
  10. https://strugaonline.mk/vesti/lokalni/na-1-vi-fevruari-zapochnuva-nacionalnata-kampanja-gi-zapoznavame-retkite-bolesti-2021/attachment/kampanja-retki-2021/
  11. https://ohrid24.mk/?tag=%D1%80%D0%B5%D1%82%D0%BA%D0%B8-%D0%B1%D0%BE%D0%BB%D0%B5%D1%81%D1%82%D0%B8
  12. https://ohridpress.com.mk/?cat=9&page=113&paged=6
  13. https://frontline.mk/2021/02/28/zaokruzhena-tretata-nacionalna-kampa-a-gi-zapoznavame-retkite-bolesti/
  14. https://denesmagazin.mk/tag/829-1253/
  15. https://doznaj.mk/2021/02/01/treta-sezona-na-proektot-gi-zapoznavame-retkite-bolesti/
  16. https://24info.mk/%D0%B3%D0%B8-%D0%B7%D0%B0%D0%BF%D0%BE%D0%B7%D0%BD%D0%B0%D0%B2%D0%B0%D0%BC%D0%B5-%D1%80%D0%B5%D1%82%D0%BA%D0%B8%D1%82%D0%B5-%D0%B1%D0%BE%D0%BB%D0%B5%D1%81%D1%82%D0%B8-28-%D0%B4%D0%B5%D0%BD%D0%B0/
  17. https://www.mkd.mk/makedonija/razno/gi-zapoznavame-retkite-bolesti-28-dena-vo-fevruari-so-28-retki-dijagnozi
  18. https://bitolanews.mk/2021/02/02/%D0%B7%D0%B0%D0%BF%D0%BE%D1%87%D0%BD%D0%B0-%D1%82%D1%80%D0%B5%D1%82%D0%B0%D1%82%D0%B0-%D1%81%D0%B5%D0%B7%D0%BE%D0%BD%D0%B0-%D0%BD%D0%B0-%D0%BF%D1%80%D0%BE%D0%B5%D0%BA%D1%82%D0%BE%D1%82-%D0%B3/
  19. https://www.publicitet.mk/na-minuvanje/item/16097-i-ovoj-fevruari-zapochnuva-kampanjata-gi-zapoznavame-retkite-bolesti
  20. https://tvm.mk/vesti/ohrid/31027-prodolzhuva-kampanjata-za-podignuvanje-na-javnata-svest-gi-zapoznavame-retkite-bolesti
  21. http://ohridskoleto.com.mk/news/%D0%BE%D1%85%D1%80%D0%B8%D0%B4%D1%81%D0%BA%D0%BE-%D0%BB%D0%B5%D1%82%D0%BE-%D1%98%D0%B0-%D0%BF%D0%BE%D0%B4%D0%B4%D1%80%D0%B6%D0%B0-%D0%BD%D0%B0%D1%86%D0%B8%D0%BE%D0%BD%D0%B0%D0%BB%D0%BD%D0%B0%D1%82/
  22. https://kanal5.com.mk/brojni-lokacii-vo-ohrid-osvetleni-vo-boite-na-retkite-bolesti/a461908
  23. https://intvaustralia.com/2021/02/20/%D0%BE%D1%85%D1%80%D0%B8%D0%B4-%D0%B1%D0%BB%D0%B5%D1%81%D0%BA%D0%B0-%D0%B2%D0%BE-%D0%B1%D0%BE%D0%B8%D1%82%D0%B5-%D0%BD%D0%B0-%D1%80%D0%B5%D1%82%D0%BA%D0%B8%D1%82%D0%B5-%D0%B1%D0%BE%D0%BB%D0%B5%D1%81/
  24. https://alsat.mk/mk/svesnost-za-litsata-so-retki-bolesti/
  25. https://apla.mk/denes/itemlist/tag/%D0%A0%D0%B5%D1%82%D0%BA%D0%B8%20%D0%B1%D0%BE%D0%BB%D0%B5%D1%81%D1%82%D0%B8?start=5
  26. http://vancopitoseski.edu.mk/?p=2066
  27. https://libertas.mk/ohrid-bleska-vo-boite-na-retkite-bolesti/
  28. https://makfax.com.mk/makedonija/%D0%BE%D1%85%D1%80%D0%B8%D0%B4-%D0%B1%D0%BB%D0%B5%D1%81%D0%BA%D0%B0-%D0%B2%D0%BE-%D0%B1%D0%BE%D0%B8%D1%82%D0%B5-%D0%BD%D0%B0-%D1%80%D0%B5%D1%82%D0%BA%D0%B8%D1%82%D0%B5-%D0%B1%D0%BE%D0%BB%D0%B5%D1%81/
  29. https://nezavisen.mk/gi-zapoznavame-retkite-bolesti-28-dena-vo-fevruari-so-28-retki-dijagnozi/
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  43. https://gragjanskizbor.mk/aktuelno/dali-dovolno-gi-znaeme-i-se-borime-protiv-retkite-bolesti/
  44. https://www.gleauty.com/MK/Ohrid/717017555358566/%D0%93%D0%B8-%D0%97%D0%B0%D0%BF%D0%BE%D0%B7%D0%BD%D0%B0%D0%B2%D0%B0%D0%BC%D0%B5-%D0%A0%D0%B5%D1%82%D0%BA%D0%B8%D1%82%D0%B5-%D0%91%D0%BE%D0%BB%D0%B5%D1%81%D1%82%D0%B8
  45. https://vecer.mk/makedonija/ohrid-bleska-vo-boite-na-retkite-bolesti/
  46. https://24info.mk/%D0%B7%D0%B0%D0%BE%D0%BA%D1%80%D1%83%D0%B6%D0%B5%D0%BD%D0%B0-%D1%82%D1%80%D0%B5%D1%82%D0%B0%D1%82%D0%B0-%D0%BD%D0%B0%D1%86%D0%B8%D0%BE%D0%BD%D0%B0%D0%BB%D0%BD%D0%B0-%D0%BA%D0%B0%D0%BC%D0%BF%D0%B0/
  47. https://m.makpress.mk/Home/PostDetails?PostId=393676
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  49. https://kanal5.com.mk/odbelezhan-denot-na-retki-bolesti/a463130
  50. https://time.mk/c/b023a26e1a/zaev-i-filipce-voveduvame-sistemski-pristap-na-griza-za-lugjeto-koi-ziveat-so-retka-bolest-i-go-zgolemuvame-brojot-na-dostapni-lekovi.html
  51. https://ekran.mk/2021/02/26/%D1%84%D0%B8%D0%BB%D0%B8%D0%BF%D1%87%D0%B5-%D0%B1%D0%BE%D0%BB%D0%B5%D1%81%D1%82%D0%B8%D1%82%D0%B5-%D1%81%D0%B5-%D1%80%D0%B5%D1%82%D0%BA%D0%B8-%D0%B0%D0%BC%D0%B0-%D0%BB%D1%83%D1%93%D0%B5/
  52. https://republika.mk/zivot/zdravje/retkata-bolest-goshe-dobi-poshtenska-marka/
  53. https://www.tvoezdravje.mk/%d0%b4%d0%b5%d0%bd%d0%b5%d1%81-%d0%b5-%d0%bc%d0%b5%d1%93%d1%83%d0%bd%d0%b0%d1%80%d0%be%d0%b4%d0%bd%d0%b8%d0%be%d1%82-%d0%b4%d0%b5%d0%bd-%d0%bd%d0%b0-%d0%bb%d0%b8%d1%86%d0%b0%d1%82%d0%b0-%d1%81%d0%be/
  54. https://bitolanews.mk/2021/02/27/%D1%84%D0%BE%D1%82%D0%BE-%D0%B2%D0%B5%D1%81%D1%82-%D0%B7%D0%B3%D1%80%D0%B0%D0%B4%D0%B0%D1%82%D0%B0-%D0%BD%D0%B0-%D0%BE%D0%BF%D1%88%D1%82%D0%B8%D0%BD%D0%B0-%D0%B1%D0%B8%D1%82%D0%BE%D0%BB%D0%B0-%D0%B2/
  55. https://www.radiomof.mk/promovirana-poshtenska-marka-posvetena-na-retkata-bolest-goshe/
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  65. https://maktel.mk/makedonija/bravo-venko-filipche-bolestite-se-retki-no-lugeto-so-retki-bolesti-ne-se-sami-za-3-godini-obezbedivme-9-novi-lekovi-i-dvojno-go-zgolemivme-budhetot/

Ден на ретки болести во Охрид 2021

Во Охрид со поддршка од општина Охрид и многу индивидуи и приватни компании, Гордана Лолеска организираше повеќе настани за подигнување на јавната свест за ретките болести.

Осветлување на Самоилова тврдина – 28 дена во февруари за ретките болести

Осветлување на градска библиотека Григор Прличев во Охрид

Основно училиште Дебрца

Снимање на песна за ретки болести

 

Иницијатива 5 до 12, Охрид

 

Учениците при СОСУ ,,Св.Кирил и Методиј”- Охрид
дел од МИСИЈАТА за да се подигне јавната свест во однос на
ретките болести.
Ретки – но никогаш сами!

 

Дополнителни настани во Охрид и Струга се достапни на следните линкови:

https://www.facebook.com/hotelbograd/photos/pcb.192793195869049/192788965869472/

https://www.facebook.com/717017555358566/posts/1261939790866337/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261824040877912/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261280464265603/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261280347598948/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261280250932291/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261199344273715/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261198484273801/?sfnsn=mo

https://www.facebook.com/watch/?v=1967775523371482

https://www.facebook.com/717017555358566/posts/1261154714278178/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261112857615697/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261089154284734/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261039994289650/?sfnsn=mo

https://www.facebook.com/watch/?v=719940318886282

https://www.facebook.com/717017555358566/posts/1259902697736713/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1259883997738583/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1259859401074376/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1259817061078610/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1259373004456349/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1259080801152236/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1258570854536564/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1258409047886078/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1258106904582959/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1257981824595467/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1257965131263803/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1257933647933618/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1257282887998694/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1257227541337562/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1256897481370568/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1256718028055180/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1256694488057534/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1256243874769262/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261199344273715/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1261198484273801/?sfnsn=mo

https://www.facebook.com/permalink.php?story_fbid=257410985869030&id=109484590661671

https://www.facebook.com/717017555358566/posts/1255404011519915/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1255367828190200/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1254748981585418/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1254676508259332/?sfnsn=mo

https://www.facebook.com/watch/?v=770559380218422

https://www.facebook.com/717017555358566/posts/1254055128321470/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1253588208368162/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1253473948379588/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1253154108411572/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1251935485200101/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1251632041897112/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1251567555236894/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1251296451930671/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1250636835329966/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1250537832006533/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1250435655350084/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1246942872366029/?sfnsn=mo

https://www.facebook.com/permalink.php?story_fbid=10157916941710994&id=36951250993

https://www.facebook.com/717017555358566/posts/1245792429147740/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1245729225820727/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1245214749205508/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1245188772541439/?sfnsn=mo

https://www.facebook.com/717017555358566/posts/1244573435936306/?sfnsn=mo

https://www.facebook.com/permalink.php?story_fbid=113015907422595&id=100649061992613

Сите активности на ЖИВОТ СО ПРЕДИЗВИЦИ се поддржани од:


Ден на ретки со институции 2021

Претседател на Република Северна Македонија
Речиси 600-тини лица во земјата живеат со некоја ретка болест.
За да им помогнеме за подобар живот, клучна е соработката помеѓу сите нас. Да подадеме рака и да покажеме дека не се сами.
//
Pothuajse 600 persona në vend jetojnë me ndonjë sëmundje të rrallë.
Bashkëpunimi midis nesh të gjithëve është i rëndësishëm që t’i ndihmojmë për një jetë më të mirë. Të japim dorën dhe të dëshmojmë se nuk janë vetë.
Воведуваме системски пристап на грижа за луѓето кои живеат со ретка болест и го зголемуваме бројот на достапни лекови.
Политиките донесени во последните 4 години сосема го променија пристапот кон справување со ретките болести и грижата за пациентите. Во 2017 година буџетот за ретки болести изнесуваше 213 милиони денари, а во 2020 година е дуплиран и изнесуваше 527 милиони денари.
Национална стратегија за ретки болести 2020-2030 дополнително ќе овозможи унапредување на законодавството според европските регулативи за лекови за ретки болести и за унапредување на експертизата на медицинскиот персонал во државата.
Министер на Република Северна Македонија, Венко Филипче
Лицата со ретки болести не се сами. Министерството за здравство е секогаш отворено за да ги слушне нивните потреби и стручно да ги следи новите и достапни терапии. Со зголемувањето на Буџетот се зголеми и бројот на лекови и достапни терапии за многу дијагнози и групи на ретки болести кои претходно не беа достапни во нашата земја. За 3 години обезбедивме 9 нови лекови и вкупно околу 560 пациенти во регистарот за ретки болести во нашата земја се целосно покриени со соодветна и најсовремена терапија. Со изработената Национална стратегија за ретки болести 2020-2030 дополнително овозможуваме унапредување на законодавството според европските регулативи за лекови за ретки болести и за унапредување на експертизата на медицинскиот персонал во нашата држава. #ShowYourRareShowYouCare#РеткиСме
Прва Дама на Република Северна Македонија, Г-ѓа Елизабета Ѓоргиевска
Стручна дискусија за подобрување на здравствените и социјалните услуги за лицата со ретки болести и посебни потреби по повод денот на лицата со ретки болести 28 Февруари.
Пациентите со ретки болести и нивните семејства се пример за храброст и за борбеност.
Имаме уште многу работа до обезбедување на правичен пристап до здравствена и социјална нега, дијагноза и третман.
И не само на Денот на ретки болести. Секој ден да се залагаме за системски решенија.
Да не дозволуваме лицата со ретки болести да бидат занемарувани, стигматизирани и изолирани. Со својот потенцијал и тие можат да придонесат кон развој на општеството.
Министер за труд и социјална политика, Г-ѓа Јагода Шахпаска
По повод Светскиот ден на ретки болести, пред сè како лекар, сакам да порачам: Животот на луѓето со ретки болести и нивните семејства не треба да биде дефиниран од нивната болест.
Социјалната реформа нуди системска поддршка за лицата со ретки болести.
Како Министерство за труд и социјална политика имаме два приоритети:
👉обезбедување на квалитетна социјална заштита и услуги за лицата со ретки болести и нивните семејства
👉создавање и практикување на холистички пристап во третманот на лицата со ретки болести и нивните семејства
🖐Ретки, но не и невидливи.

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