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International neonatal screening day

Monday June 28th, 2021by admin in News/Press Releases

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

Monday May 31st, 2021by admin in News/Press Releases

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

Monday May 31st, 2021by admin in News/Press Releases

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

 

Rare disease day in Bitola 2021

Thursday March 4th, 2021by admin in News/Press Releases

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

Thursday March 4th, 2021by admin in News/Press Releases
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

Thursday March 4th, 2021by admin in News/Press Releases

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

Thursday March 4th, 2021by admin in News/Press Releases

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

Monday March 1st, 2021by admin in News/Press Releases
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
Влада на Република Северна Македонија
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.
🖐Rare but not invisible

New postal stamp for rare diseases 2021

Monday February 15th, 2021by admin in News/Press Releases

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.

 

 

Rare Diseases Database

Wednesday October 7th, 2020by admin in News/Press Releases

The Rare Diseases Database is a unique regional project aimed at shortening the time to diagnosis and providing broad support to patients suffering from rare diseases, their families, and doctors.

LIFE WITH CHALLENGES is involved since the beginning of this project. At this moment included countries are: Serbia, North Macedonia, Monte Negro. Republic of Srpska, Croatia. We hope others will join too. 

By entering any term in the search box, the database gives you an insight into the rare diseases that encompass that term.

By clicking on an individual disease, a description of the disease is obtained and additional data, if any, are displayed, also with the contact of association, if there is any.

Subscribing to the forum, you can exchange information and experience with people from around the whole region.

There are two forums: for patients and medical professionals. We call everyone to join the platform and start connecting with people. 

More about the base on the web site: https://www.retkebolesti.com/mk , video is also available on: видео-база на ретки болести.

We like to thank everyone who participated in tranlsation: Goce Kalcev, Maja Tankoska, Hristina Stojmirova, Dejan Jakimovski.  

For rare diseases you need to know that:

  • – 75% of rare diseases are in child age
  • – 30% of patients do not celebrate their fifth birthday
  • – It takes between 5 and 8 years on average to come to a precise diagnose for a patient
  • – Patient changes at least eight doctors/specialists until he or she gets a correct diagnosis
  • – Until they find precise diagnosis patients have between 3 and 5 wrong diagnoses.

We call everyone to join us and make this base a center for sharing knowledge, best practice, and communication between people in the region interested in rare diseases.

RARE, BUT NEVER ALONE

This project is supported by:

Vesna Aleksovska, chair of LIFE WITH CHALLENGES

Tel: +389 (0)70 70 54 46

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

Information about the association:

LIFE WITH CHALLENGES is a member of:

 

 

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Живот со предизвици е членка на дледниве организации: (iapo.org.uk), (eurordis.org), (eurogaucher.org), (mds-alliance.org), (www.worldpompe.org), (NARB Makedonija), (apo.org.mk),