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International neonatal screening day

Today is International newborn screening day. Today is also PKU day. This is why today we have to remind the public and the institutions that in North Macedonia, screening for PKU and other metabolic diseases is only partially available, not for all newborn babies.

PKU is a disease that is mandatorily screened in many countries in the world. North Macedonia is the only country in the region that does this screening only for 2000 to 4000 babies (20 000 are born during the year). The number usually depends on the financial situation of the program for screening at the Ministry of Health.

Since the disease is not discovered at birth, but at 2 months, 6 months, and sometimes in a year or 2, the situation is not good. Children with PKU who are not discovered at birth have mental and physical problems during their life. This is why it is important to screen for PKU. To provide a normal life for children with PKU and their families.

In this post we include the translated principles for newborn screening for rare diseases from EURORDIS:

Начела за скрининг на новороденчиња

More information about PKU in Macedonian language are available here:

Брошура за фенилкетонурија

More information on International PKU day:

International PKU Day – June 28th


Poetry race in Struga

At the poetry race in Struga, on 23rd of May, 2021, some participants were running for equity for rare diseases.

Our volunteers shared informative and educative materials for rare diseases at the event to raise awareness for rare diseases in North Macedonia.


COVID 19 vaccination for rare diseases

Dear patients and families

Adult patients and parents of children with rare diseases can be vaccinated in Boris Trajkovski in Skopje. They have a list from the register of rare diseases from the Ministry of Health.

To prove you are a patient or a parent you need a document where the disease is mentioned (like a report from the hospital, specialists, genetic test, or other). The document does not have to be new.

Also please have a document for identification.

do not go early in the morning as it is more crowded so please go after 10 in the morning.

Vaccination is not mandatory it is your choice.

More information on COVID 19 and vaccination of rare disease patients can be found on the resource page of EURORDIS on the following link – https://www.eurordis.org/covid19resources

 


About the Association Life With Challenges

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 Hereditary Angioedema, 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, Hereditary Angioedema, Allagile Syndrome,  Tyrosinemia, Lenox Gastaut Syndrome, Congenital Muscular Dis trophy,  Congenital Cataract, Epydermolysis Bulosa, Carnitine plamitolitransferase deficiency, Pulmonary Hypertension, Adrenomyeloneuropathy, Wilson Diseases, 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, …  and 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?

 

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.

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 – .

5 5-1 5-2

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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Rare disease day in Bitola 2021

In Bitola LIFE WITH CHALLENGES, organized different activities with the help of Hepar center Bitola, Interact club Bitola, gymnasium Josip Broz Tito Bitola and the municipality of Bitola. Many other schools and individuals joined in the activities for support of rare diseases.

Coloring hands, telling stories, sharing information in Bitola

Activities in the center of the city – sharing colored paper hands

Illumination of the municipality building in Bitola

Educative discussion on rare diseases, and stories from patients from Bitola

 

Kliment Ohridski and Joisp Broz Tito in Bitola
Les bons amis t’aident à retrouver ton sourire, ton espoir et ton courage.
Ogni bambino ha diritto di essere sano.
Rêver seul ne reste qu’un rêve ! Rêver ensemble devient la réalité.
SIAMO TANTI, SIAMO FORTI, SIAMO RARI.
Qui est en bonne santé, est riche sans le savoir.
L’amore vince tutto!
Etre rare, c’est être fort. !

Todor Angjeleski school in Bitola

All activities of LIFE WITH CHALLENGES are supported by:


Rare disease day Skopje, 2021

Promotion of postal stamps for rare diseases in Skopje. Together with the Post from North Macedonia we organized the promotion of the third rare disease postal stamp. The first one was for children with rare diseases, the second for Alport syndrome, and the third for Gaucher disease. This is initiative of Gordana Loleska.
We participated in lectures organized by Macedonian Medicine Student Association dedicated to rare diseases.
 
School pop Georgiev Berovski – Hrom, Skopje.
Rare disease day with MPS 4 child at his school

All activities of LIFE WITH CHALLENGES are supported by:


Rare disease day in the media, 2021

Alsat Tv show on health/ Алсат емисија за здравје

Additional links to media announcemtns:

  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/
  30. https://www.google.com/search?q=%D1%80%D0%B5%D1%82%D0%BA%D0%B8+%D0%B1%D0%BE%D0%BB%D0%B5%D1%81%D1%82%D0%B8+2021&client=firefox-b-d&sxsrf=ALeKk02E0dL8KKvYvXrs46-TwlupY8IBUg:1616259173841&ei=ZShWYN_hMoyclwT-qq3ABQ&start=50&sa=N&ved=2ahUKEwifqK_Pqr_vAhUMzoUKHX5VC1g4KBDw0wN6BAgBEEc&biw=1350&bih=613
  31. https://www.24.mk/details/dali-da-se-vakciniraat-pacinetite-so-retki-bolesti
  32. https://maktel.mk/makedonija/bravo-se-budi-svesta-za-liczata-so-retki-bolesti-vo-zemjava-semejstva-so-slichni-dijagnozi-se-povrzuvaat-i-spodeluvaat-iskustva/
  33. 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/
  34. https://www.radiomof.mk/aktivistite-i-vladata-gi-oboija-racete-za-denot-na-retki-bolesti/
  35. https://www.apla.mk/direktno/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
  36. https://fokus.mk/gi-zapoznavame-retkite-bolesti-2021-28-dena-vo-fevruari-so-28-retki-dijagnozi-2/
  37. https://prkos.mk/izjava/fevruari-za-faktite/
  38. https://www.dpgb.edu.mk/2021/02/25/%D0%B3%D0%BE-%D0%BE%D0%B4%D0%B1%D0%B5%D0%BB%D0%B5%D0%B6%D1%83%D0%B2%D0%B0%D0%BC%D0%B5-%D0%BC%D0%B5%D1%81%D0%B5%D1%86%D0%BE%D1%82-%D0%BD%D0%B0-%D1%80%D0%B5%D1%82%D0%BA%D0%B8%D1%82%D0%B5-%D0%B1%D0%BE/
  39. https://denesmagazin.mk/tag/829-1253/
  40. https://www.ohridnews.com/i-sveta-sofi-a-vo-boite-na-licata-so-retki-bolesti/
  41. https://reporter.mk/gjuture/foto-kabinetot-na-pretsedatelot-pendarovski-osvetlen-vo-boite-na-retkite-bolesti/
  42. https://frontline.mk/2021/02/03/vo-boite-na-retkite-bolesti-osvetleni-i-vodite-na-ohridskoto-ezero/
  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
  48. https://24info.mk/%D0%BE%D0%B4%D0%B1%D0%B5%D0%BB%D0%B5%D0%B6%D0%B0%D0%BD-%D0%B4%D0%B5%D0%BD%D0%BE%D1%82-%D0%BD%D0%B0-%D1%80%D0%B5%D1%82%D0%BA%D0%B8-%D0%B1%D0%BE%D0%BB%D0%B5%D1%81%D1%82%D0%B8-%D1%81%D0%BE-%D1%81%D1%82/
  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/
  56. https://www.biznisvesti.mk/promotsija-na-poshtenska-marka-posvetena-na-bolest-na-goshe/
  57. https://sdk.mk/index.php/magazin/retkata-bolest-goshe-dobi-poshtenska-marka-ke-se-otpechati-vo-6-iljadi-primerotsi/
  58. https://mia.mk/promoci-a-na-poshtenska-marka-posvetena-na-bolest-na-goshe/
  59. https://www.ohridnews.com/promoci-a-na-poshtenska-marka-posvetena-na-bolest-na-goshe/
  60. https://opserver.mk/makedonija/promocija-na-poshtenska-marka-posvetena-na-bolest-na-goshe/
  61. https://ohridpress.com.mk/?p=127360
  62. https://theworldnews.net/mk-news/retkata-bolest-goshe-dobi-poshtenska-marka-kje-se-otpechati-vo-6-iljadi-primerotsi-sakam-da-kazham
  63. https://fox5.mk/a/af6393c973/retkata-bolest-goshe-dobi-poshtenska-marka-kje-se-otpechati-vo-6-iljadi-primeroci
  64. https://vesti.mk/c/TQWg3XcB4-jeX-N4W5X9/2021-02-26/promocija-na-poshtenska-marka-posvetena-na-bolest-na-goshe
  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/

 


Rare disease day in Ohrid, 2021

In Ohrid with the support of the municipality and a lot of friends and companies, Gordana Loleska organized a lot of activities in support of rare diseases.

Illumination of the SAmoil fortress, 28 days in February in support of rare disease families

 

illumination of  the city library Grigor Prlichev in Ohrid

Schoold Debrca

A song for rare diseases

 

5 to 12 initiative, Ohrid

Cyril and Methodius School, Ohrid

Additional events in Ohrid and Struga are available at the following Facebook links:

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

All activities of LIFE WITH CHALLENGES are supported by:


Support from institutions on RDD 2021

The president of North Macedonia
The president posted a picture for RDD with his family in support of rare disease families and they also illuminated their house in RDD colors.
More than 600 families live with a rare disease in our country. We need to help them by cooperating and support them in their requests for a better quality of life.
//
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.
Government of North Macedonia
The Prime Minsiter Zoran Zaev and the Minister of Health Venko Filipche, had a meeting with the associations for rare diseases. They stated that for rare diseases we need a systematic approach and they will continue to increase the number of available medicines for rare diseases. In 2017 the budget for rare diseases was 213 million MKD, today it is 527 million MKD.
Further the plan is to adopt a national strategy for rare diseases which will mean progress in the laws according to the EU regulatives for rare diseases and it will support the education of medical professionals in our country.
Minister of health of North Macedonia, Venko Filpche  Венко Филипче
People with rare diseases are not alone. The ministry of health is always open to hear about the problems and to follow the new approach and access to treatment and care. With the increase of the budget, we increased the treatment for different diagnoses. In 3 years we managed to get 9 new medicines and there are 560 patients in the registry developed by the commission for rare diseases. With the national strategy for rare diseases, we will continue to improve the lives of families with rare diseases.  #ShowYourRareShowYouCare#РеткиСме
The First Lady of North Macedonia, Ms Elizabeta Gjorgievska 
Our First Lady organized an expert discussion for improvement of health and social services for families with rare diseases, together with doctors, researchers, psychologists, and ministry representatives.
Patients with rare diseases and their families are example for courage and hope. We have a lot of work to do, so that we can offer equity in social and health care for them.
This is not something we need to do only for RDD, every day we need to advocate for a systemic approach to treatment, care, and diagnosis. We should not allow rare diseases to be marginalized and isolated. They have the potential to contribute to our society and we need to give them a chance to participate in the improvement of health and social care.
Minister of labor and social policy, Ms Jagoda Shapapaska 
For RDD I want to say that the life of people with rare diseases and their families whould not be defined by their diseases. Social reform should offer systemic support for people with rare diseases. As a ministry for labor and social policy we have 2 priorities:
– Provision of quality social protection and services for people with rare diseases and their families
– development and practice of holistic approach in the treatment of people for rare diseases and support for their families.

New postal stamp for rare diseases 2021

For RDD this year among other events we are organizing a promotion for a postal stamp dedicated to rare diseases.

The first one was for children with rare diseases, the second for Alport syndrome and now we have another one.

We invited institutions and media together with the Macedonian post and the event will be on the internet so everyone can follow.

We will focus on newborn screening and equity in social and health services.

 

 


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