{"id":159754,"date":"2025-11-20T17:34:01","date_gmt":"2025-11-20T17:34:01","guid":{"rendered":"https:\/\/www.kidneyresearchuk.org\/?p=159754"},"modified":"2025-11-25T09:43:27","modified_gmt":"2025-11-25T09:43:27","slug":"parliamentary-launch-of-rare-kidney-diseases-report","status":"publish","type":"post","link":"https:\/\/www.kidneyresearchuk.org\/2025\/11\/20\/parliamentary-launch-of-rare-kidney-diseases-report\/","title":{"rendered":"Parliamentary Launch of Rare Kidney Diseases Report at House of Commons Roundtable"},"content":{"rendered":"\n\n\t\t\n\t<p>This week, we hosted the parliamentary launch of our new report on rare kidney diseases at a high-profile roundtable event in the House of Commons.\u00a0<\/p>\n\t\t\t\t<img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2025\/11\/Roundtable-1.png\" alt=\"A group of people sitting in a semi-circle around a table\" itemprop=\"image\" height=\"553\" width=\"752\" title=\"Parliamentary Launch of Rare Kidney Diseases Report at House of Commons Roundtable\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2025\/11\/Roundtable-1.png\" alt=\"A group of people sitting in a semi-circle around a table\" itemprop=\"image\" height=\"553\" width=\"752\" title=\"Parliamentary Launch of Rare Kidney Diseases Report at House of Commons Roundtable\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><\/noscript>\n\t\tHouse of Commons Roundtable \n\t<p>The event was hosted by Stuart Andrew MP, Shadow Secretary of State for Health and Social Care, and brought together key voices from patient and clinical communities, government, and industry.<\/p>\n<p>We were honoured to welcome Health Minister Dr Zubir Ahmed MP, Dame June Raine, George Agathangelou (ZS Associates), Professor Louise Oni, and kidney patients Kathryn and 15-year-old Morven, who shared their powerful experiences.<\/p>\n<p>The roundtable highlighted the urgent need for action to support the estimated 160,000 people in the UK living with a rare kidney disease. Discussions focused on building consensus for:<\/p>\n<ul>\n<li>Earlier diagnosis<\/li>\n<li>Improved access to treatments<\/li>\n<li>Greater\u00a0access to\u00a0clinical trials for children<\/li>\n<\/ul>\n\t<p>&nbsp;<\/p>\n<p>Alison Railton, director of policy and public affairs, said: &#8220;It was heartening to see such shared commitment and passion to make a real difference for patients and families affected by rare kidney diseases. <\/p>\n<p>&#8220;We will now build on this momentum to make the case to government for meaningful change.&#8221;\u00a0<\/p>\n\t\t\t\t<img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2025\/11\/Roundtable-2.png\" alt=\"Young adult sitting on panel alongside two women and one man. The young adult is speaking into a microphone.\" itemprop=\"image\" height=\"432\" width=\"752\" title=\"Morven Hutchinson\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2025\/11\/Roundtable-2.png\" alt=\"Young adult sitting on panel alongside two women and one man. The young adult is speaking into a microphone.\" itemprop=\"image\" height=\"432\" width=\"752\" title=\"Morven Hutchinson\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><\/noscript>\n\t\tMorven Hutchison speaking at House of Commons Roundtable \n\t\t\t\t<img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2023\/03\/rare-diseases-report-booklet.png\" alt=\"rare-diseases-report-booklet\" itemprop=\"image\" height=\"1200\" width=\"1200\" title=\"rare-diseases-report-booklet\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2023\/03\/rare-diseases-report-booklet.png\" alt=\"rare-diseases-report-booklet\" itemprop=\"image\" height=\"1200\" width=\"1200\" title=\"rare-diseases-report-booklet\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><\/noscript>\n\t<h3>Collectively common: the devastating impact of rare kidney diseases in the UK<\/h3>\n<p>Our independently produced report reveals\u00a0the impact of\u00a0rare kidney diseases.<\/p>\n<p>The report shows that people with rare kidney diseases face significant diagnosis delays, inconsistent care and long waits for new treatments, with children in particular left at greater risk of medical, educational, and economic disruption.<\/p>\n\t\t\t<a href=\"https:\/\/www.kidneyresearchuk.org\/2025\/09\/24\/the-devastating-impact-of-rare-kidney-diseases\/\" target=\"_self\">\n\t\t\t\t\t\t\tFind out more\n\t\t\t\t\t<\/a>\n<h2>\n\t\t\tRead our latest news\t<\/h2>\n\t\t<h2>Why not make a donation now?<\/h2>\n\t\t<p>Every \u00a3 counts towards transforming treatments for people living with kidney disease.<\/p>\n\t\t\t<a href=\"https:\/\/kidneyresearchuk.org\/support\/donate\/\" target=\"_self\">\n\t\t\t\t\t\t\tDonate now\n\t\t\t\t\t<\/a>\n\n","protected":false},"excerpt":{"rendered":"<p>This week, we hosted the parliamentary launch of our new report on rare kidney diseases at a high-profile roundtable event in the House of Commons.\u00a0 House of Commons Roundtable The event was hosted by Stuart Andrew MP, Shadow Secretary of State for Health and Social Care, and brought together key voices from patient and clinical&hellip;<\/p>\n","protected":false},"author":44,"featured_media":159752,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[309],"tags":[402],"class_list":["post-159754","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-policy","tag-cystinosis"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Parliamentary Launch of 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