{"id":1356,"date":"2025-07-07T13:29:27","date_gmt":"2025-07-07T17:29:27","guid":{"rendered":"https:\/\/guide.cophan.org\/?post_type=fiche&#038;p=1356"},"modified":"2025-07-07T15:59:49","modified_gmt":"2025-07-07T19:59:49","slug":"rare-diseases","status":"publish","type":"fiche","link":"https:\/\/guide.cophan.org\/en\/thematic-fact-sheets\/rare-diseases\/","title":{"rendered":"Rare diseases"},"content":{"rendered":"\r\n\r\n<section class=\"container-eklo has-background has-white-background-color\">\r\n    <div class=\"deco-circle custom-spacing\">\r\n        <svg width=\"233\" height=\"384\" viewBox=\"0 0 233 384\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\r\n            <g clip-path=\"url(#clip0_59_24)\">\r\n                <path fill-rule=\"evenodd\" clip-rule=\"evenodd\" d=\"M371 105.931C400.271 105.931 424 82.2176 424 52.9655C424 23.7135 400.271 0 371 0C341.729 0 318 23.7135 318 52.9655C318 82.2176 341.729 105.931 371 105.931ZM278.25 59.5862C278.25 85.1818 257.487 105.931 231.875 105.931C206.263 105.931 185.5 85.1818 185.5 59.5862C185.5 33.9907 206.263 13.2414 231.875 13.2414C257.487 13.2414 278.25 33.9907 278.25 59.5862ZM112.625 92.6906C130.919 92.6906 145.75 77.8696 145.75 59.5871C145.75 41.3046 130.919 26.4837 112.625 26.4837C94.3306 26.4837 79.5 41.3046 79.5 59.5871C79.5 77.8696 94.3306 92.6906 112.625 92.6906ZM19.875 79.4478C30.8517 79.4478 39.75 70.5552 39.75 59.5857C39.75 48.6162 30.8517 39.7236 19.875 39.7236C8.89834 39.7236 0 48.6162 0 59.5857C0 70.5552 8.89834 79.4478 19.875 79.4478ZM39.75 192C39.75 202.97 30.8517 211.862 19.875 211.862C8.89834 211.862 0 202.97 0 192C0 181.03 8.89834 172.138 19.875 172.138C30.8517 172.138 39.75 181.03 39.75 192ZM112.625 225.103C130.919 225.103 145.75 210.283 145.75 192C145.75 173.717 130.919 158.897 112.625 158.897C94.3306 158.897 79.5 173.717 79.5 192C79.5 210.283 94.3306 225.103 112.625 225.103ZM278.25 191.999C278.25 217.595 257.487 238.344 231.875 238.344C206.263 238.344 185.5 217.595 185.5 191.999C185.5 166.404 206.263 145.655 231.875 145.655C257.487 145.655 278.25 166.404 278.25 191.999ZM371 238.346C400.271 238.346 424 214.632 424 185.38C424 156.128 400.271 132.415 371 132.415C341.729 132.415 318 156.128 318 185.38C318 214.632 341.729 238.346 371 238.346ZM39.75 337.655C39.75 348.625 30.8517 357.517 19.875 357.517C8.89834 357.517 0 348.625 0 337.655C0 326.686 8.89834 317.793 19.875 317.793C30.8517 317.793 39.75 326.686 39.75 337.655ZM112.625 370.758C130.919 370.758 145.75 355.937 145.75 337.654C145.75 319.372 130.919 304.551 112.625 304.551C94.3306 304.551 79.5 319.372 79.5 337.654C79.5 355.937 94.3306 370.758 112.625 370.758ZM278.25 337.656C278.25 363.251 257.487 384.001 231.875 384.001C206.263 384.001 185.5 363.251 185.5 337.656C185.5 312.06 206.263 291.311 231.875 291.311C257.487 291.311 278.25 312.06 278.25 337.656ZM371 384C400.271 384 424 360.287 424 331.034C424 301.782 400.271 278.069 371 278.069C341.729 278.069 318 301.782 318 331.034C318 360.287 341.729 384 371 384Z\" fill=\"#008FFF\"\/>\r\n            <\/g>\r\n            <defs>\r\n                <clipPath id=\"clip0_59_24\">\r\n                    <rect width=\"233\" height=\"384\" fill=\"white\"\/>\r\n                <\/clipPath>\r\n            <\/defs>\r\n        <\/svg>\r\n    <\/div>\r\n    <div class=\"container\">\r\n        <!--\r\n       <div class=\"contrainer-title\">\r\n           <h2><\/h2>\r\n       <\/div>\r\n       -->        <div class=\"container-eklo-content\">\r\n            <div class=\"acf-innerblocks-container\">\n\n<p>Qu\u00e9bec faces a number of issues regarding rare diseases, but initiatives are underway to address them. About 7,000 rare diseases affect a small portion of the population, often making it difficult to diagnose and get access to complex treatments. Here are some key points:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Qu\u00e9bec has implemented measures to improve access to care for people with rare diseases, but gaps remain, including early diagnosis and follow-up.<\/li>\n\n\n\n<li>Specialized reference centres have been set up to better manage these diseases, but their availability varies by region.<\/li>\n\n\n\n<li>Government and various organizations support research on rare diseases, while also raising awareness among the public and health professionals.<\/li>\n\n\n\n<li>Resources and support are available to families, but there is an increased need for psychological and social services.<\/li>\n\n\n\n<li>The creation of databases on rare diseases provides a better understanding of their prevalence and helps inform public policy.<\/li>\n<\/ul>\n\n\n\n<p>Continued efforts are needed to improve the situation for patients and their families.<\/p>\n\n<\/div>\r\n        <\/div>\r\n    <\/div>\r\n    <div class=\"border-container\"><\/div>\r\n<\/section>\r\n\r\n\n\n\r\n\r\n<section class=\"container-eklo has-background has-white-background-color\">\r\n    <div class=\"deco-circle custom-spacing\">\r\n        <svg width=\"233\" height=\"384\" viewBox=\"0 0 233 384\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\r\n            <g clip-path=\"url(#clip0_59_24)\">\r\n                <path fill-rule=\"evenodd\" clip-rule=\"evenodd\" d=\"M371 105.931C400.271 105.931 424 82.2176 424 52.9655C424 23.7135 400.271 0 371 0C341.729 0 318 23.7135 318 52.9655C318 82.2176 341.729 105.931 371 105.931ZM278.25 59.5862C278.25 85.1818 257.487 105.931 231.875 105.931C206.263 105.931 185.5 85.1818 185.5 59.5862C185.5 33.9907 206.263 13.2414 231.875 13.2414C257.487 13.2414 278.25 33.9907 278.25 59.5862ZM112.625 92.6906C130.919 92.6906 145.75 77.8696 145.75 59.5871C145.75 41.3046 130.919 26.4837 112.625 26.4837C94.3306 26.4837 79.5 41.3046 79.5 59.5871C79.5 77.8696 94.3306 92.6906 112.625 92.6906ZM19.875 79.4478C30.8517 79.4478 39.75 70.5552 39.75 59.5857C39.75 48.6162 30.8517 39.7236 19.875 39.7236C8.89834 39.7236 0 48.6162 0 59.5857C0 70.5552 8.89834 79.4478 19.875 79.4478ZM39.75 192C39.75 202.97 30.8517 211.862 19.875 211.862C8.89834 211.862 0 202.97 0 192C0 181.03 8.89834 172.138 19.875 172.138C30.8517 172.138 39.75 181.03 39.75 192ZM112.625 225.103C130.919 225.103 145.75 210.283 145.75 192C145.75 173.717 130.919 158.897 112.625 158.897C94.3306 158.897 79.5 173.717 79.5 192C79.5 210.283 94.3306 225.103 112.625 225.103ZM278.25 191.999C278.25 217.595 257.487 238.344 231.875 238.344C206.263 238.344 185.5 217.595 185.5 191.999C185.5 166.404 206.263 145.655 231.875 145.655C257.487 145.655 278.25 166.404 278.25 191.999ZM371 238.346C400.271 238.346 424 214.632 424 185.38C424 156.128 400.271 132.415 371 132.415C341.729 132.415 318 156.128 318 185.38C318 214.632 341.729 238.346 371 238.346ZM39.75 337.655C39.75 348.625 30.8517 357.517 19.875 357.517C8.89834 357.517 0 348.625 0 337.655C0 326.686 8.89834 317.793 19.875 317.793C30.8517 317.793 39.75 326.686 39.75 337.655ZM112.625 370.758C130.919 370.758 145.75 355.937 145.75 337.654C145.75 319.372 130.919 304.551 112.625 304.551C94.3306 304.551 79.5 319.372 79.5 337.654C79.5 355.937 94.3306 370.758 112.625 370.758ZM278.25 337.656C278.25 363.251 257.487 384.001 231.875 384.001C206.263 384.001 185.5 363.251 185.5 337.656C185.5 312.06 206.263 291.311 231.875 291.311C257.487 291.311 278.25 312.06 278.25 337.656ZM371 384C400.271 384 424 360.287 424 331.034C424 301.782 400.271 278.069 371 278.069C341.729 278.069 318 301.782 318 331.034C318 360.287 341.729 384 371 384Z\" fill=\"#008FFF\"\/>\r\n            <\/g>\r\n            <defs>\r\n                <clipPath id=\"clip0_59_24\">\r\n                    <rect width=\"233\" height=\"384\" fill=\"white\"\/>\r\n                <\/clipPath>\r\n            <\/defs>\r\n        <\/svg>\r\n    <\/div>\r\n    <div class=\"container\">\r\n        <!--\r\n       <div class=\"contrainer-title\">\r\n           <h2><\/h2>\r\n       <\/div>\r\n       -->        <div class=\"container-eklo-content\">\r\n            <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Overview of the situation<\/h2>\n\n\n\n<p>The portrait of rare diseases in Qu\u00e9bec is characterized by several key elements:<\/p>\n\n\n\r\n<ul class=\"list-advance\">\r\n                    <li class=\"list-items\" data-aos=\"fade-up\">\r\n                            <h3 class=\"list-title\">\r\n                    Incidence and prevalence:                <\/h3>\r\n                        <div class=\"list-content\">\r\n\t\t\t\t<p>About 1 in 20 people are affected by a rare disease, which represents about 400,000 people in Qu\u00e9bec. Although most rare diseases are individual, their diversity means that thousands of new cases can emerge each year. Prevalence varies by disease, with some more frequent in certain populations.<\/p>\n            <\/div>\r\n        <\/li>\r\n                    <li class=\"list-items\" data-aos=\"fade-up\">\r\n                            <h3 class=\"list-title\">\r\n                    Characteristics:                <\/h3>\r\n                        <div class=\"list-content\">\r\n\t\t\t\t<p>Rare diseases include genetic, metabolic, neurological and immune-related disorders, among many others. About 80% of rare diseases have a genetic origin. These diseases can affect all age groups, although they are often diagnosed during childhood.<\/p>\n            <\/div>\r\n        <\/li>\r\n                    <li class=\"list-items\" data-aos=\"fade-up\">\r\n                            <h3 class=\"list-title\">\r\n                    Epidemiological challenges:                <\/h3>\r\n                        <div class=\"list-content\">\r\n\t\t\t\t<p>Many cases remain undiagnosed or misdiagnosed, making it difficult to accurately estimate incidence and prevalence. Data may be incomplete due to lack of awareness and expertise in detecting these diseases.<\/p>\n            <\/div>\r\n        <\/li>\r\n                    <li class=\"list-items\" data-aos=\"fade-up\">\r\n                            <h3 class=\"list-title\">\r\n                    Resources and studies:                <\/h3>\r\n                        <div class=\"list-content\">\r\n\t\t\t\t<p>Studies are underway to better understand the epidemiology of rare diseases in Qu\u00e9bec, with research initiatives aimed at establishing registries and databases to collect more comprehensive information. The epidemiology of rare diseases in Qu\u00e9bec is marked by challenges related to diagnosis and data collection. Ongoing efforts are needed to better understand the incidence and prevalence of rare diseases to improve patient care and support.<\/p>\n            <\/div>\r\n        <\/li>\r\n    <\/ul>\n<\/div>\r\n        <\/div>\r\n    <\/div>\r\n    <div class=\"border-container\"><\/div>\r\n<\/section>\r\n\r\n\n\n\r\n\r\n<section class=\"container-eklo has-background has-green-light-background-color has-text-color has-black-color wp-elements-d23459951fe5a78546e8bb3867e17cb4\">\r\n    <div class=\"deco-circle custom-spacing\">\r\n        <svg width=\"233\" height=\"384\" viewBox=\"0 0 233 384\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\r\n            <g clip-path=\"url(#clip0_59_24)\">\r\n                <path fill-rule=\"evenodd\" clip-rule=\"evenodd\" d=\"M371 105.931C400.271 105.931 424 82.2176 424 52.9655C424 23.7135 400.271 0 371 0C341.729 0 318 23.7135 318 52.9655C318 82.2176 341.729 105.931 371 105.931ZM278.25 59.5862C278.25 85.1818 257.487 105.931 231.875 105.931C206.263 105.931 185.5 85.1818 185.5 59.5862C185.5 33.9907 206.263 13.2414 231.875 13.2414C257.487 13.2414 278.25 33.9907 278.25 59.5862ZM112.625 92.6906C130.919 92.6906 145.75 77.8696 145.75 59.5871C145.75 41.3046 130.919 26.4837 112.625 26.4837C94.3306 26.4837 79.5 41.3046 79.5 59.5871C79.5 77.8696 94.3306 92.6906 112.625 92.6906ZM19.875 79.4478C30.8517 79.4478 39.75 70.5552 39.75 59.5857C39.75 48.6162 30.8517 39.7236 19.875 39.7236C8.89834 39.7236 0 48.6162 0 59.5857C0 70.5552 8.89834 79.4478 19.875 79.4478ZM39.75 192C39.75 202.97 30.8517 211.862 19.875 211.862C8.89834 211.862 0 202.97 0 192C0 181.03 8.89834 172.138 19.875 172.138C30.8517 172.138 39.75 181.03 39.75 192ZM112.625 225.103C130.919 225.103 145.75 210.283 145.75 192C145.75 173.717 130.919 158.897 112.625 158.897C94.3306 158.897 79.5 173.717 79.5 192C79.5 210.283 94.3306 225.103 112.625 225.103ZM278.25 191.999C278.25 217.595 257.487 238.344 231.875 238.344C206.263 238.344 185.5 217.595 185.5 191.999C185.5 166.404 206.263 145.655 231.875 145.655C257.487 145.655 278.25 166.404 278.25 191.999ZM371 238.346C400.271 238.346 424 214.632 424 185.38C424 156.128 400.271 132.415 371 132.415C341.729 132.415 318 156.128 318 185.38C318 214.632 341.729 238.346 371 238.346ZM39.75 337.655C39.75 348.625 30.8517 357.517 19.875 357.517C8.89834 357.517 0 348.625 0 337.655C0 326.686 8.89834 317.793 19.875 317.793C30.8517 317.793 39.75 326.686 39.75 337.655ZM112.625 370.758C130.919 370.758 145.75 355.937 145.75 337.654C145.75 319.372 130.919 304.551 112.625 304.551C94.3306 304.551 79.5 319.372 79.5 337.654C79.5 355.937 94.3306 370.758 112.625 370.758ZM278.25 337.656C278.25 363.251 257.487 384.001 231.875 384.001C206.263 384.001 185.5 363.251 185.5 337.656C185.5 312.06 206.263 291.311 231.875 291.311C257.487 291.311 278.25 312.06 278.25 337.656ZM371 384C400.271 384 424 360.287 424 331.034C424 301.782 400.271 278.069 371 278.069C341.729 278.069 318 301.782 318 331.034C318 360.287 341.729 384 371 384Z\" fill=\"#008FFF\"\/>\r\n            <\/g>\r\n            <defs>\r\n                <clipPath id=\"clip0_59_24\">\r\n                    <rect width=\"233\" height=\"384\" fill=\"white\"\/>\r\n                <\/clipPath>\r\n            <\/defs>\r\n        <\/svg>\r\n    <\/div>\r\n    <div class=\"container\">\r\n        <!--\r\n       <div class=\"contrainer-title\">\r\n           <h2><\/h2>\r\n       <\/div>\r\n       -->        <div class=\"container-eklo-content\">\r\n            <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Standards and obligations<\/h2>\n\n\n\n<p>In Qu\u00e9bec, standards and obligations for rare diseases are governed by several laws and policies. Key aspects include:<\/p>\n\n\n\r\n<div class=\"accordions-block\">\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-laws-and-regulations-1\" aria-expanded=\"false\" aria-controls=\"panel-laws-and-regulations-1\">Laws and regulations:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-laws-and-regulations-1\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li><strong>Act respecting health services and social services:<\/strong> This law guarantees citizens\u2019 right to appropriate health care, including for persons with rare diseases.<\/li>\n<li><strong>Privacy Act:<\/strong> This legislation governs the management of health data, including that of patients with rare diseases.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-public-health-programs-2\" aria-expanded=\"false\" aria-controls=\"panel-public-health-programs-2\">Public health programs:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-public-health-programs-2\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li>Neonatal screening programs identify certain rare diseases at birth, thus facilitating early diagnosis and rapid management.<\/li>\n<li>Specialized centres have been set up for the diagnosis and treatment of rare diseases, offering adapted and coordinated care.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-access-to-treatments-3\" aria-expanded=\"false\" aria-controls=\"panel-access-to-treatments-3\">Access to treatments:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-access-to-treatments-3\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li>Qu\u00e9bec has policies to promote access to treatment for rare diseases, including financial assistance programs for expensive drugs.<\/li>\n<li>New therapies for rare diseases are evaluated for efficacy and safety prior to reimbursement.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-family-support-4\" aria-expanded=\"false\" aria-controls=\"panel-family-support-4\">Family support:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-family-support-4\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li>Government and community agencies provide support to affected families, including psychosocial services and information on available resources.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-research-and-innovation-5\" aria-expanded=\"false\" aria-controls=\"panel-research-and-innovation-5\">Research and innovation:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-research-and-innovation-5\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li>Funding is allocated for rare disease research and collaborations are encouraged between health institutions and universities.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n    <\/div>\r\n\n\n\n<p>The regulatory framework for rare diseases in Qu\u00e9bec aims to ensure equitable access to care and treatment, while supporting research and protecting patient rights. Ongoing efforts are needed to bolster these initiatives and improve the quality of life of those affected.<\/p>\n\n<\/div>\r\n        <\/div>\r\n    <\/div>\r\n    <div class=\"border-container\"><\/div>\r\n<\/section>\r\n\r\n\n\n\r\n\r\n<section class=\"container-eklo has-background has-white-background-color has-text-color has-black-color wp-elements-573955a22313f66d288eba4cf03857f6\">\r\n    <div class=\"deco-circle custom-spacing\">\r\n        <svg width=\"233\" height=\"384\" viewBox=\"0 0 233 384\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\r\n            <g clip-path=\"url(#clip0_59_24)\">\r\n                <path fill-rule=\"evenodd\" clip-rule=\"evenodd\" d=\"M371 105.931C400.271 105.931 424 82.2176 424 52.9655C424 23.7135 400.271 0 371 0C341.729 0 318 23.7135 318 52.9655C318 82.2176 341.729 105.931 371 105.931ZM278.25 59.5862C278.25 85.1818 257.487 105.931 231.875 105.931C206.263 105.931 185.5 85.1818 185.5 59.5862C185.5 33.9907 206.263 13.2414 231.875 13.2414C257.487 13.2414 278.25 33.9907 278.25 59.5862ZM112.625 92.6906C130.919 92.6906 145.75 77.8696 145.75 59.5871C145.75 41.3046 130.919 26.4837 112.625 26.4837C94.3306 26.4837 79.5 41.3046 79.5 59.5871C79.5 77.8696 94.3306 92.6906 112.625 92.6906ZM19.875 79.4478C30.8517 79.4478 39.75 70.5552 39.75 59.5857C39.75 48.6162 30.8517 39.7236 19.875 39.7236C8.89834 39.7236 0 48.6162 0 59.5857C0 70.5552 8.89834 79.4478 19.875 79.4478ZM39.75 192C39.75 202.97 30.8517 211.862 19.875 211.862C8.89834 211.862 0 202.97 0 192C0 181.03 8.89834 172.138 19.875 172.138C30.8517 172.138 39.75 181.03 39.75 192ZM112.625 225.103C130.919 225.103 145.75 210.283 145.75 192C145.75 173.717 130.919 158.897 112.625 158.897C94.3306 158.897 79.5 173.717 79.5 192C79.5 210.283 94.3306 225.103 112.625 225.103ZM278.25 191.999C278.25 217.595 257.487 238.344 231.875 238.344C206.263 238.344 185.5 217.595 185.5 191.999C185.5 166.404 206.263 145.655 231.875 145.655C257.487 145.655 278.25 166.404 278.25 191.999ZM371 238.346C400.271 238.346 424 214.632 424 185.38C424 156.128 400.271 132.415 371 132.415C341.729 132.415 318 156.128 318 185.38C318 214.632 341.729 238.346 371 238.346ZM39.75 337.655C39.75 348.625 30.8517 357.517 19.875 357.517C8.89834 357.517 0 348.625 0 337.655C0 326.686 8.89834 317.793 19.875 317.793C30.8517 317.793 39.75 326.686 39.75 337.655ZM112.625 370.758C130.919 370.758 145.75 355.937 145.75 337.654C145.75 319.372 130.919 304.551 112.625 304.551C94.3306 304.551 79.5 319.372 79.5 337.654C79.5 355.937 94.3306 370.758 112.625 370.758ZM278.25 337.656C278.25 363.251 257.487 384.001 231.875 384.001C206.263 384.001 185.5 363.251 185.5 337.656C185.5 312.06 206.263 291.311 231.875 291.311C257.487 291.311 278.25 312.06 278.25 337.656ZM371 384C400.271 384 424 360.287 424 331.034C424 301.782 400.271 278.069 371 278.069C341.729 278.069 318 301.782 318 331.034C318 360.287 341.729 384 371 384Z\" fill=\"#008FFF\"\/>\r\n            <\/g>\r\n            <defs>\r\n                <clipPath id=\"clip0_59_24\">\r\n                    <rect width=\"233\" height=\"384\" fill=\"white\"\/>\r\n                <\/clipPath>\r\n            <\/defs>\r\n        <\/svg>\r\n    <\/div>\r\n    <div class=\"container\">\r\n        <!--\r\n       <div class=\"contrainer-title\">\r\n           <h2><\/h2>\r\n       <\/div>\r\n       -->        <div class=\"container-eklo-content\">\r\n            <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Good practices<\/h2>\n\n\n\n<p>There are a number of good practices internationally that focus on innovative strategies and approaches to manage rare diseases. Notable practices include:<\/p>\n\n\n\r\n<div class=\"accordions-block list-counter\">\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-specialized-reference-centres-1\" aria-expanded=\"false\" aria-controls=\"panel-specialized-reference-centres-1\">Specialized reference centres:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-specialized-reference-centres-1\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li><strong>Creating centres of excellence:<\/strong> These centres bring together experts and resources to deliver multidisciplinary care adapted to patients with rare diseases.<\/li>\n<li><strong>Neonatal screening programs:<\/strong> Many countries implement screening programs to identify rare diseases from birth, thus facilitating early interventions.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-access-to-treatments-2\" aria-expanded=\"false\" aria-controls=\"panel-access-to-treatments-2\">Access to treatments:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-access-to-treatments-2\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li><strong>Orphan drug policies:<\/strong> Regulations have been adopted to encourage the development and access to medicines for rare diseases, often accompanied by financial incentives for pharmaceutical companies.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-database-and-registries-3\" aria-expanded=\"false\" aria-controls=\"panel-database-and-registries-3\">Database and registries:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-database-and-registries-3\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li><strong>Data collection:<\/strong> The creation of databases and registries provides a better understanding of the epidemiology of rare diseases, facilitating the research and development of treatments.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-psychosocial-support-4\" aria-expanded=\"false\" aria-controls=\"panel-psychosocial-support-4\">Psychosocial support:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-psychosocial-support-4\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li><strong>Family support programs:<\/strong> Psychological and social support services help families cope with the challenges of managing rare diseases.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-awareness-and-training-5\" aria-expanded=\"false\" aria-controls=\"panel-awareness-and-training-5\">Awareness and training:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-awareness-and-training-5\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li><strong>Training for health care professionals:<\/strong> Educating doctors and health professionals about rare diseases is crucial to improving diagnosis and care.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-collaborative-research-6\" aria-expanded=\"false\" aria-controls=\"panel-collaborative-research-6\">Collaborative research:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-collaborative-research-6\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li><strong>International partnerships:<\/strong> Collaboration between research institutions, universities and businesses fosters innovation and knowledge sharing.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-inclusive-policies-7\" aria-expanded=\"false\" aria-controls=\"panel-inclusive-policies-7\">Inclusive policies:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-inclusive-policies-7\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li><strong>Inclusion of patients in decisions:<\/strong> Involving patients and their families in the development of health policies to ensure their needs are taken into account.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                    <div class=\"accordion\" data-aos=\"fade-up\">\r\n            <h3 class=\"accordion-title\">\r\n                <a class=\"accordion-link\" role=\"button\" href=\"#panel-international-leaders-8\" aria-expanded=\"false\" aria-controls=\"panel-international-leaders-8\">International leaders:<\/a>\r\n            <\/h3>\r\n\r\n            <div class=\"accordion-panel\" id=\"panel-international-leaders-8\" style=\"display: none;\">\r\n\t\t\t\t<ul>\n<li><strong>European Union:<\/strong> Creation of European Reference Networks for rare diseases.<\/li>\n<li><strong>USA:<\/strong> The Rare Disease Day program and initiatives such as the FDA\u2019s Orphan Drug Designation facilitate access to treatment.<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n    <\/div>\r\n\n\n\n<p>Best practices for rare disease management are based on an integrated approach that combines care, research, awareness and collaboration. These strategies contribute to improving patients\u2019 quality of life and driving meaningful advances in the field.<\/p>\n\n<\/div>\r\n        <\/div>\r\n    <\/div>\r\n    <div class=\"border-container\"><\/div>\r\n<\/section>\r\n\r\n\n\n\r\n\r\n<section class=\"container-eklo has-background has-rose-light-background-color\">\r\n    <div class=\"deco-circle custom-spacing\">\r\n        <svg width=\"233\" height=\"384\" viewBox=\"0 0 233 384\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\r\n            <g clip-path=\"url(#clip0_59_24)\">\r\n                <path fill-rule=\"evenodd\" clip-rule=\"evenodd\" d=\"M371 105.931C400.271 105.931 424 82.2176 424 52.9655C424 23.7135 400.271 0 371 0C341.729 0 318 23.7135 318 52.9655C318 82.2176 341.729 105.931 371 105.931ZM278.25 59.5862C278.25 85.1818 257.487 105.931 231.875 105.931C206.263 105.931 185.5 85.1818 185.5 59.5862C185.5 33.9907 206.263 13.2414 231.875 13.2414C257.487 13.2414 278.25 33.9907 278.25 59.5862ZM112.625 92.6906C130.919 92.6906 145.75 77.8696 145.75 59.5871C145.75 41.3046 130.919 26.4837 112.625 26.4837C94.3306 26.4837 79.5 41.3046 79.5 59.5871C79.5 77.8696 94.3306 92.6906 112.625 92.6906ZM19.875 79.4478C30.8517 79.4478 39.75 70.5552 39.75 59.5857C39.75 48.6162 30.8517 39.7236 19.875 39.7236C8.89834 39.7236 0 48.6162 0 59.5857C0 70.5552 8.89834 79.4478 19.875 79.4478ZM39.75 192C39.75 202.97 30.8517 211.862 19.875 211.862C8.89834 211.862 0 202.97 0 192C0 181.03 8.89834 172.138 19.875 172.138C30.8517 172.138 39.75 181.03 39.75 192ZM112.625 225.103C130.919 225.103 145.75 210.283 145.75 192C145.75 173.717 130.919 158.897 112.625 158.897C94.3306 158.897 79.5 173.717 79.5 192C79.5 210.283 94.3306 225.103 112.625 225.103ZM278.25 191.999C278.25 217.595 257.487 238.344 231.875 238.344C206.263 238.344 185.5 217.595 185.5 191.999C185.5 166.404 206.263 145.655 231.875 145.655C257.487 145.655 278.25 166.404 278.25 191.999ZM371 238.346C400.271 238.346 424 214.632 424 185.38C424 156.128 400.271 132.415 371 132.415C341.729 132.415 318 156.128 318 185.38C318 214.632 341.729 238.346 371 238.346ZM39.75 337.655C39.75 348.625 30.8517 357.517 19.875 357.517C8.89834 357.517 0 348.625 0 337.655C0 326.686 8.89834 317.793 19.875 317.793C30.8517 317.793 39.75 326.686 39.75 337.655ZM112.625 370.758C130.919 370.758 145.75 355.937 145.75 337.654C145.75 319.372 130.919 304.551 112.625 304.551C94.3306 304.551 79.5 319.372 79.5 337.654C79.5 355.937 94.3306 370.758 112.625 370.758ZM278.25 337.656C278.25 363.251 257.487 384.001 231.875 384.001C206.263 384.001 185.5 363.251 185.5 337.656C185.5 312.06 206.263 291.311 231.875 291.311C257.487 291.311 278.25 312.06 278.25 337.656ZM371 384C400.271 384 424 360.287 424 331.034C424 301.782 400.271 278.069 371 278.069C341.729 278.069 318 301.782 318 331.034C318 360.287 341.729 384 371 384Z\" fill=\"#008FFF\"\/>\r\n            <\/g>\r\n            <defs>\r\n                <clipPath id=\"clip0_59_24\">\r\n                    <rect width=\"233\" height=\"384\" fill=\"white\"\/>\r\n                <\/clipPath>\r\n            <\/defs>\r\n        <\/svg>\r\n    <\/div>\r\n    <div class=\"container\">\r\n        <!--\r\n       <div class=\"contrainer-title\">\r\n           <h2><\/h2>\r\n       <\/div>\r\n       -->        <div class=\"container-eklo-content\">\r\n            <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Available resources<\/h2>\n\n\n\n<p>References to relevant literature and resources on rare diseases and related interventions and actions include:<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Works:<\/h3>\n\n\n\r\n<ul class=\"list-advance\">\r\n                    <li class=\"list-items\" data-aos=\"fade-up\">\r\n                        <div class=\"list-content\">\r\n\t\t\t\t<p><strong>Rare Diseases:<\/strong> A Global Perspective, Paolo P. F. F. A. De Marco et al.<br \/>\nThis book covers global challenges related to rare diseases, exploring health policy and intervention strategies.<\/p>\n            <\/div>\r\n        <\/li>\r\n                    <li class=\"list-items\" data-aos=\"fade-up\">\r\n                        <div class=\"list-content\">\r\n\t\t\t\t<p><strong>The Rare Disease Patient Journey<\/strong>, Rachael M. Franks et al.<br \/>\nThis book studies the journey of patients with rare diseases, focusing on best care practices.<\/p>\n            <\/div>\r\n        <\/li>\r\n                    <li class=\"list-items\" data-aos=\"fade-up\">\r\n                        <div class=\"list-content\">\r\n\t\t\t\t<p><strong>Handbook of Rare Diseases<\/strong>, Michael R. Kelly et al.<br \/>\nA comprehensive resource that details various rare diseases, treatments and associated clinical approaches.<\/p>\n            <\/div>\r\n        <\/li>\r\n                    <li class=\"list-items\" data-aos=\"fade-up\">\r\n                        <div class=\"list-content\">\r\n\t\t\t\t<p><strong>Rare Disorders and Orphan Drugs: A Global Perspective<\/strong>, C. K. Chawla et al.<br \/>\nThis book discusses orphan drugs, health policies and ethical issues related to rare diseases.<\/p>\n            <\/div>\r\n        <\/li>\r\n    <\/ul>\n\n\n<h3 class=\"wp-block-heading\">Digital resources:<\/h3>\n\n\n\n<ul class=\"wp-block-list is-style-list-check\">\n<li><strong>Orphanet:<\/strong> an information portal on rare diseases and orphan drugs, providing data on research and available resources.<\/li>\n\n\n\n<li><strong>European Organization for Rare Diseases (EURORDIS)<\/strong>: an organization representing rare disease patients in Europe, providing resources, studies and reports.<\/li>\n\n\n\n<li><strong>National Institutes of Health (NIH) &#8211; Genetic and Rare Diseases Information Center (GARD)<\/strong>: a resource dedicated to information on rare diseases and genetic conditions, providing data on treatments and research.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Scientific articles:<\/h3>\n\n\n\n<ul class=\"wp-block-list is-style-list-check\">\n<li><strong>Current and Emerging Therapies for Rare Diseases<\/strong>, Journal of Rare Diseases<br>This article reviews current and emerging therapies for rare diseases, with a focus on innovations in the field.<\/li>\n\n\n\n<li><strong>Patient Advocacy and Rare Diseases<\/strong>, Health Policy<br>A study that explores the role of patient advocacy groups in raising awareness of rare diseases and improving care for those affected.<\/li>\n<\/ul>\n\n\n\n<p>These resources provide essential information on rare diseases, their treatments and best practices for intervention. They are particularly useful for health professionals, researchers, and families affected by these conditions.<\/p>\n\n<\/div>\r\n        <\/div>\r\n    <\/div>\r\n    <div class=\"border-container\"><\/div>\r\n<\/section>\r\n\r\n\n\n\r\n\r\n<section class=\"container-eklo has-background has-white-background-color\">\r\n    <div class=\"deco-circle custom-spacing\">\r\n        <svg width=\"233\" height=\"384\" viewBox=\"0 0 233 384\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\r\n            <g clip-path=\"url(#clip0_59_24)\">\r\n                <path fill-rule=\"evenodd\" clip-rule=\"evenodd\" d=\"M371 105.931C400.271 105.931 424 82.2176 424 52.9655C424 23.7135 400.271 0 371 0C341.729 0 318 23.7135 318 52.9655C318 82.2176 341.729 105.931 371 105.931ZM278.25 59.5862C278.25 85.1818 257.487 105.931 231.875 105.931C206.263 105.931 185.5 85.1818 185.5 59.5862C185.5 33.9907 206.263 13.2414 231.875 13.2414C257.487 13.2414 278.25 33.9907 278.25 59.5862ZM112.625 92.6906C130.919 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370.758ZM278.25 337.656C278.25 363.251 257.487 384.001 231.875 384.001C206.263 384.001 185.5 363.251 185.5 337.656C185.5 312.06 206.263 291.311 231.875 291.311C257.487 291.311 278.25 312.06 278.25 337.656ZM371 384C400.271 384 424 360.287 424 331.034C424 301.782 400.271 278.069 371 278.069C341.729 278.069 318 301.782 318 331.034C318 360.287 341.729 384 371 384Z\" fill=\"#008FFF\"\/>\r\n            <\/g>\r\n            <defs>\r\n                <clipPath id=\"clip0_59_24\">\r\n                    <rect width=\"233\" height=\"384\" fill=\"white\"\/>\r\n                <\/clipPath>\r\n            <\/defs>\r\n        <\/svg>\r\n    <\/div>\r\n    <div class=\"container\">\r\n        <!--\r\n       <div class=\"contrainer-title\">\r\n           <h2><\/h2>\r\n       <\/div>\r\n       -->        <div class=\"container-eklo-content\">\r\n            <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Fiches connexes dans ce guide<\/h2>\n\n\n<div class=\"highlight-posts\">\r\n    <div class=\"row g-3\" role=\"list\">\r\n                    <div class=\"col-xl-3 col-lg-4 col-md-6 col-12\">\r\n                <article class=\"news-item\" data-aos=\"fade-up\" data-clickable-permalink>\r\n                    <div class=\"news-item-content order-1\">\r\n                        <h3 class=\"news-item-title\">\r\n                            <a href=\"https:\/\/guide.cophan.org\/en\/thematic-fact-sheets\/transport-adapte-et-accessible\/\">Paratransit and accessible transit<\/a>\r\n                        <\/h3>\r\n                    <\/div>\r\n                    <div class=\"news-item-thumbnail order-0\">\r\n                                                    <img loading=\"lazy\" decoding=\"async\" width=\"739\" height=\"1024\" src=\"https:\/\/guide.cophan.org\/wp-content\/uploads\/2025\/03\/img_transport_adapte-739x1024.jpg\" class=\"attachment-large size-large wp-post-image\" alt=\"\" srcset=\"https:\/\/guide.cophan.org\/wp-content\/uploads\/2025\/03\/img_transport_adapte-739x1024.jpg 739w, https:\/\/guide.cophan.org\/wp-content\/uploads\/2025\/03\/img_transport_adapte-217x300.jpg 217w, https:\/\/guide.cophan.org\/wp-content\/uploads\/2025\/03\/img_transport_adapte-768x1064.jpg 768w, https:\/\/guide.cophan.org\/wp-content\/uploads\/2025\/03\/img_transport_adapte.jpg 820w\" sizes=\"auto, (max-width: 739px) 100vw, 739px\" \/>                                            <\/div>\r\n                <\/article>\r\n            <\/div>\r\n                    <div class=\"col-xl-3 col-lg-4 col-md-6 col-12\">\r\n                <article class=\"news-item\" data-aos=\"fade-up\" data-clickable-permalink>\r\n                    <div class=\"news-item-content order-1\">\r\n                        <h3 class=\"news-item-title\">\r\n                            <a href=\"https:\/\/guide.cophan.org\/en\/thematic-fact-sheets\/environmental-health\/\">Environmental health<\/a>\r\n                        <\/h3>\r\n                    <\/div>\r\n                    <div class=\"news-item-thumbnail order-0\">\r\n                                                    <img loading=\"lazy\" decoding=\"async\" width=\"681\" height=\"1024\" src=\"https:\/\/guide.cophan.org\/wp-content\/uploads\/2025\/03\/sante-environnementale-681x1024.jpg\" class=\"attachment-large size-large wp-post-image\" alt=\"\" srcset=\"https:\/\/guide.cophan.org\/wp-content\/uploads\/2025\/03\/sante-environnementale-681x1024.jpg 681w, https:\/\/guide.cophan.org\/wp-content\/uploads\/2025\/03\/sante-environnementale-200x300.jpg 200w, https:\/\/guide.cophan.org\/wp-content\/uploads\/2025\/03\/sante-environnementale-768x1154.jpg 768w, https:\/\/guide.cophan.org\/wp-content\/uploads\/2025\/03\/sante-environnementale.jpg 821w\" sizes=\"auto, (max-width: 681px) 100vw, 681px\" \/>                                            <\/div>\r\n                <\/article>\r\n            <\/div>\r\n                    <div 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