{"id":232779,"date":"2025-06-03T13:31:43","date_gmt":"2025-06-03T17:31:43","guid":{"rendered":"https:\/\/www.worldpatientsalliance.org\/?post_type=news&p=232779"},"modified":"2025-12-31T14:53:08","modified_gmt":"2025-12-31T14:53:08","slug":"wpa-welcomes-landmark-who-resolution-on-rare-diseases-calls-for-urgent-action-to-turn-words-into-action","status":"publish","type":"news","link":"https:\/\/worldpatientsalliance.org\/staging\/news\/wpa-welcomes-landmark-who-resolution-on-rare-diseases-calls-for-urgent-action-to-turn-words-into-action\/","title":{"rendered":"WPA Welcomes Landmark WHO Resolution on Rare Diseases, Calls for Urgent Action to Turn Words into Action"},"content":{"rendered":"

WPA Welcomes Landmark WHO Resolution on Rare Diseases, Calls for Urgent Action to Turn Words into Action<\/strong><\/p>\n

The WPA celebrates the historic adoption of the\u202ffirst-ever World Health Assembly resolution on rare diseases, marking a pivotal milestone in the fight for equity, inclusion, and access to care for the world\u2019s 300 million people living with one of over 7000 rare diseases.<\/p>\n

The resolution, adopted at the\u202fSeventy-eighth World Health Assembly 2025, formally recognizes rare diseases as a\u202fglobal health priority\u202fand calls on Member States to take decisive action to ensure that\u202fno patient is left behind.<\/p>\n

A Win for Patients \u2014 But the Hard Work Starts Now<\/strong><\/p>\n

\u201cThis resolution is a powerful acknowledgment that the challenges faced by people living with rare diseases are real, urgent, and deserve global attention,\u201d said Andrew Spiegel, Chair of WPA. \u201cHowever, resolutions alone are not enough. We now need\u202fconcrete action, resources, and accountability\u202fto translate these commitments into better lives for patients and families worldwide.\u201d<\/p>\n

Key Provisions: A Blueprint for Change<\/strong><\/p>\n

The resolution urges governments to:<\/p>\n

Integrate rare diseases into national health planning<\/p>\n

Improve diagnosis, care, and treatment under the umbrella of\u202funiversal health coverage (UHC)<\/p>\n

Foster inclusive policies that leave no patient behind<\/p>\n

Accelerate innovation and research<\/p>\n

Ensure\u202faffordable access\u202fto effective treatments and interventions<\/p>\n

Importantly, the resolution mandates WHO to develop a\u202f10-year global action plan on rare diseases, with measurable targets that aim to address the profound inequities that rare disease patients often face.<\/p>\n

Equity and Inclusion at the Heart\u00a0<\/strong><\/p>\n

WPA strongly supports the resolution\u2019s emphasis on\u202fequity and inclusion, recognizing that many rare diseases begin in childhood and can cause lifelong challenges physically, emotionally, and financially. Families often experience diagnostic odysseys, lack of access to specialists, and crushing out-of-pocket costs.<\/p>\n

\u201cToo often, rare disease patients suffer in silence, overlooked by health systems that were not designed to meet their needs,\u201d noted Andrew Spiegel. \u201cThis resolution is a step towards changing that narrative towards building\u202fhealth systems that are inclusive, patient-centered, and resilient.\u201d<\/p>\n

From Resolution to Results: The WPA\u2019s Call to Action\u00a0<\/strong><\/p>\n

WPA calls on all stakeholders governments, WHO, health systems, researchers, industry, and patient organizations to:<\/p>\n

Act quickly to develop the WHO global action plan, ensuring meaningful patient involvement in every step<\/p>\n

Invest in diagnostic capacity and workforce training\u202fto shorten time to diagnosis<\/p>\n

Remove financial barriers\u202fand promote sustainable reimbursement models to ensure access to affordable treatment<\/p>\n

Support cross-border collaboration\u202fand knowledge-sharing to accelerate research and innovation<\/p>\n

The WPA Commitment\u00a0<\/strong><\/p>\n

WPA pledges to work collaboratively with WHO, Member States, and the global rare disease community to\u202fensure that the voices of patients and families are heard, respected, and reflected in policy and practice.<\/p>\n

This resolution is a beacon of hope. Let\u2019s work together to make it a catalyst for real, lasting change.<\/p>\n","protected":false},"excerpt":{"rendered":"

WPA Welcomes Landmark WHO Resolution on Rare Diseases, Calls for Urgent Action to Turn Words into Action The WPA celebrates the historic adoption of the\u202ffirst-ever World Health Assembly resolution on […]<\/p>\n","protected":false},"author":1,"featured_media":232780,"comment_status":"open","ping_status":"closed","template":"","tags":[],"news-category":[15],"class_list":["post-232779","news","type-news","status-publish","has-post-thumbnail","hentry","news-category-wpa-news"],"_links":{"self":[{"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/news\/232779","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/news"}],"about":[{"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/types\/news"}],"author":[{"embeddable":true,"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/comments?post=232779"}],"version-history":[{"count":1,"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/news\/232779\/revisions"}],"predecessor-version":[{"id":234431,"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/news\/232779\/revisions\/234431"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/media\/232780"}],"wp:attachment":[{"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/media?parent=232779"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/tags?post=232779"},{"taxonomy":"news-category","embeddable":true,"href":"https:\/\/worldpatientsalliance.org\/staging\/wp-json\/wp\/v2\/news-category?post=232779"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}