![\"\"](\"https:\/\/www.togetherforlife.org.al\/wp-content\/uploads\/2026\/07\/IMG_4414-scaled.jpg\")
<\/p>\nTogether for Life\u00a0zhvilloi nj\u00eb fokus-grup me persona\u00a0q\u00eb jetojn\u00eb me\u00a0fibroz\u00eb cistike dhe\u00a0prind\u00ebr t\u00eb f\u00ebmij\u00ebve\u00a0t\u00eb prekur nga\u00a0kjo s\u00ebmundje, p\u00ebr t\u00eb\u00a0diskutuar ndikimin q\u00eb\u00a0ka pasur zbatimi\u00a0i skem\u00ebs s\u00eb\u00a0re t\u00eb vler\u00ebsimit\u00a0t\u00eb aft\u00ebsis\u00eb s\u00eb\u00a0kufizuar, bazuar n\u00eb\u00a0modelin\u00a0bio-psiko-social, si dhe sfidat\u00a0q\u00eb ata vazhdojn\u00eb\u00a0t\u00eb p\u00ebrballen \u00e7do\u00a0dit\u00eb.<\/p>\n
<\/p>\n
Gjat\u00eb diskutimit u ngrit\u00ebn shqet\u00ebsime serioze mbi:
\n\u2022 v\u00ebshtir\u00ebsit\u00eb n\u00eb procesin\u00a0e vler\u00ebsimit t\u00eb\u00a0aft\u00ebsis\u00eb s\u00eb kufizuar\u00a0dhe munges\u00ebn e\u00a0njohjes s\u00eb plot\u00eb\u00a0t\u00eb k\u00ebsaj patologjie\u00a0nga komisionet e\u00a0vler\u00ebsimit;
\n\u2022 munges\u00ebn e mb\u00ebshtetjes\u00a0psikologjike p\u00ebr pacient\u00ebt\u00a0dhe familjet q\u00eb\u00a0nga momenti i\u00a0diagnostikimit;
\n\u2022 aksesin e kufizuar n\u00eb trajtime\u00a0dhe medikamente t\u00eb\u00a0domosdoshme, shum\u00eb prej\u00a0t\u00eb cilave mbeten\u00a0t\u00eb pap\u00ebrballueshme financiarisht;
\n\u2022 munges\u00ebn e nj\u00eb\u00a0qasjeje t\u00eb integruar\u00a0p\u00ebr mbulimin e\u00a0nevojave sh\u00ebndet\u00ebsore,\u00a0sociale dhe t\u00eb\u00a0pun\u00ebsimit;
\n\u2022 nevoj\u00ebn p\u00ebr politika\u00a0publike q\u00eb njohin\u00a0fibroz\u00ebn\u00a0cistike si nj\u00eb\u00a0s\u00ebmundje komplekse, q\u00eb\u00a0k\u00ebrkon trajtim multidisiplinar\u00a0dhe mb\u00ebshtetje t\u00eb\u00a0vazhdueshme.<\/p>\n
![\"\"](\"https:\/\/www.togetherforlife.org.al\/wp-content\/uploads\/2026\/07\/IMG_4448-scaled.jpg\")
<\/p>\n
Ky fokus-grup\u00a0\u00ebsht\u00eb pjes\u00eb\u00a0e monitorimit t\u00eb\u00a0efekteve t\u00eb reform\u00ebs\u00a0s\u00eb vler\u00ebsimit t\u00eb\u00a0aft\u00ebsis\u00eb s\u00eb kufizuar\u00a0dhe synon t\u00eb\u00a0siguroj\u00eb q\u00eb z\u00ebri\u00a0dhe p\u00ebrvoja e\u00a0personave t\u00eb\u00a0prekur t\u00eb reflektohen\u00a0n\u00eb p\u00ebrmir\u00ebsimin e\u00a0politikave publike.<\/p>\n
Askush nuk duhet\u00a0t\u00eb mbetet pa\u00a0mb\u00ebshtetje p\u00ebr shkak\u00a0t\u00eb nj\u00eb sistemi\u00a0q\u00eb nuk arrin\u00a0t\u00eb kuptoj\u00eb kompleksitetin\u00a0e nevojave t\u00eb\u00a0tij.<\/p>\n
![\"\"](\"https:\/\/www.togetherforlife.org.al\/wp-content\/uploads\/2026\/07\/IMG_4457-scaled.jpg\")
<\/p>\n
***<\/p>\n
Together for Life organized a focus group with people living with cystic fibrosis and parents of children affected by the condition to discuss the impact of the implementation of the new disability assessment scheme based on the bio-psycho-social model, as well as the challenges they continue to face in accessing healthcare, social protection, and employment opportunities.<\/p>\n
Participants highlighted several critical concerns, including:
\n\u2022 challenges in the disability assessment process and the limited recognition of cystic fibrosis by assessment commissions;
\n\u2022 the lack of psychological support for patients and their families from the moment of diagnosis;
\n\u2022 limited access to essential medicines and treatment, many of which remain financially out of reach;
\n\u2022 the absence of an integrated approach to addressing healthcare, social, and employment needs;
\n\u2022 the urgent need for public policies that recognize cystic fibrosis as a complex condition requiring multidisciplinary care and long-term support.<\/p>\n
This focus group forms part of the broader monitoring of the effects of Albania’s disability assessment reform and aims to ensure that the experiences and voices of people living with cystic fibrosis are reflected in future policy improvements.<\/p>","protected":false},"excerpt":{"rendered":"
Together for Life\u00a0zhvilloi nj\u00eb fokus-grup me persona\u00a0q\u00eb jetojn\u00eb me\u00a0fibroz\u00eb cistike dhe\u00a0prind\u00ebr t\u00eb f\u00ebmij\u00ebve\u00a0t\u00eb prekur nga\u00a0kjo s\u00ebmundje, p\u00ebr t\u00eb\u00a0diskutuar ndikimin q\u00eb\u00a0ka pasur zbatimi\u00a0i skem\u00ebs s\u00eb\u00a0re t\u00eb vler\u00ebsimit\u00a0t\u00eb aft\u00ebsis\u00eb s\u00eb\u00a0kufizuar, bazuar n\u00eb\u00a0modelin\u00a0bio-psiko-social, […]<\/p>","protected":false},"author":17,"featured_media":35145,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[93],"tags":[],"class_list":["post-35144","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aktivitetet-e-fundit"],"yoast_head":"\n