{"id":118,"date":"2026-09-22T13:05:22","date_gmt":"2026-09-22T13:05:22","guid":{"rendered":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/?page_id=118"},"modified":"2026-11-05T18:15:36","modified_gmt":"2026-11-05T18:15:36","slug":"our-approach","status":"publish","type":"page","link":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/fr\/our-approach\/","title":{"rendered":"Our Approach"},"content":{"rendered":"<main id='oxy-main'><div class=\"oxy-container-118-260 oxy-container od-page-our-approach\"><div class=\"oxy-container-118-259 oxy-container od-fx-793346c73\"><div class=\"oxy-container-118-266 oxy-container od-products-notice-wrap\"><aside class=\"oxy-container-118-265 oxy-container od-products-notice\" aria-labelledby=\"approach-notice-title\"><div class=\"oxy-svg-icon2-118-261 oxy-svg-icon2 od-products-notice-icon\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M16 21v-2a4 4 0 0 0-4-4H6a4 4 0 0 0-4 4v2\"><\/path><circle cx=\"9\" cy=\"7\" r=\"4\"><\/circle><path d=\"M22 21v-2a4 4 0 0 0-3-3.87\"><\/path><path d=\"M16 3.13a4 4 0 0 1 0 7.75\"><\/path><\/svg>\n<\/div><div class=\"oxy-container-118-264 oxy-container od-products-notice-copy\"><h2 class=\"oxy-text-118-262 oxy-text od-products-notice-title\" id=\"approach-notice-title\">\nFor Patients and Caregivers\n<\/h2><p class=\"oxy-text-118-263 oxy-text od-products-notice-body\">\nThis information is intended for patients and caregivers. Always consult with your healthcare provider about your specific medical condition and treatment options. Do not start, stop or change any treatment without first consulting your doctor.\n<\/p><\/div><\/aside><\/div><section class=\"oxy-container-118-279 oxy-container od-hero\" aria-labelledby=\"approach-title\"><div class=\"oxy-container-118-278 oxy-container od-container\"><div class=\"oxy-container-118-269 oxy-container od-hero-heading\"><div class=\"oxy-svg-icon2-118-267 oxy-svg-icon2 od-hero-icon od-approach-hero-icon\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M19 14c1.49-1.46 3-3.21 3-5.5A5.5 5.5 0 0 0 16.5 3c-1.76 0-3 .5-4.5 2-1.5-1.5-2.74-2-4.5-2A5.5 5.5 0 0 0 2 8.5c0 2.3 1.5 4.05 3 5.5l7 7Z\"><\/path><\/svg>\n<\/div><h1 class=\"oxy-text-118-268 oxy-text od-hero-title\" id=\"approach-title\">\nPatient-Centric Approach\n<\/h1><\/div><p class=\"oxy-text-118-270 oxy-text od-hero-lead\">\nPartnering with the rare disease community\n<\/p><p class=\"oxy-text-118-271 oxy-text od-hero-copy\">\nAt Orphalan, patients inspire our work and serve as our collaborators. We recognise that in the world of rare diseases, the patient and their family are often the leading experts, and our commitment is to listen, learn and incorporate the patient voice into our work.\n<\/p><div class=\"oxy-container-118-274 oxy-container od-hero-actions\"><a class=\"oxy-text-link-118-272 oxy-text-link od-button od-button--accent od-button--borderless\" href=\"\/patient-support-groups\/\" target=\"_self\">\nFind Support Groups\n<\/a><a class=\"oxy-text-link-118-273 oxy-text-link od-button od-button--outlined-light\" href=\"\/contact\/\" target=\"_self\">\nGet in Touch\n<\/a><\/div><button class=\"oxy-container-link-118-277 oxy-container-link od-hero-back od-approach-back\" target=\"_self\" data-interactions=\"[{&quot;trigger&quot;:&quot;click&quot;,&quot;prevent_default&quot;:true,&quot;actions&quot;:[{&quot;name&quot;:&quot;javascript_function&quot;,&quot;js_function_name&quot;:&quot;orphalanHeroBack&quot;}]}]\" id=\"approach-back\" type=\"button\" aria-label=\"Go back to the previous page\"><div class=\"oxy-svg-icon2-118-275 oxy-svg-icon2 od-hero-back-icon\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"m15 18-6-6 6-6\"><\/path><\/svg>\n<\/div><span class=\"oxy-text-118-276 oxy-text od-link-label\">\nBack\n<\/span><\/button><\/div><\/section><section class=\"oxy-container-118-301 oxy-container od-section\" aria-labelledby=\"approach-engagement-title\"><div class=\"oxy-container-118-300 oxy-container od-container\"><header class=\"oxy-container-118-283 oxy-container od-home-heading\"><span class=\"oxy-text-118-280 oxy-text od-eyebrow\">\nWE CARE\n<\/span><h2 class=\"oxy-text-118-281 oxy-text od-home-heading-title od-approach-heading--fixed\" id=\"approach-engagement-title\">\nOur Approach to Engagement\n<\/h2><p class=\"oxy-text-118-282 oxy-text od-home-heading-lead od-approach-heading-lead\">\nThis is how we collaborate with patients, caregivers and the wider rare disease community, at every stage of our work.\n<\/p><\/header><div class=\"oxy-container-118-299 oxy-container od-approach-engagement-grid\"><article class=\"oxy-container-118-288 oxy-container od-registry-pillar-card od-approach-engagement-card\"><div class=\"oxy-container-118-285 oxy-container od-registry-pillar-icon\"><div class=\"oxy-svg-icon2-118-284 oxy-svg-icon2 od-registry-pillar-symbol\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M6 8.5a6.5 6.5 0 1 1 13 0c0 6-6 6-6 10a3.5 3.5 0 1 1-7 0\"><\/path><path d=\"M15 8.5a2.5 2.5 0 0 0-5 0v1a2 2 0 1 1 0 4\"><\/path><\/svg>\n<\/div><\/div><h3 class=\"oxy-text-118-286 oxy-text od-card-title\">\nListening and Learning\n<\/h3><p class=\"oxy-text-118-287 oxy-text od-body\">\nWe actively seek out the lived experiences of those affected by rare conditions. By engaging with patient advocacy groups and community leaders, we aim to ensure our clinical development programmes reflect the real-world challenges patients face every day.\n<\/p><\/article><article class=\"oxy-container-118-293 oxy-container od-registry-pillar-card od-approach-engagement-card\"><div class=\"oxy-container-118-290 oxy-container od-registry-pillar-icon\"><div class=\"oxy-svg-icon2-118-289 oxy-svg-icon2 od-registry-pillar-symbol\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"m11 17 2 2a1 1 0 1 0 3-3\"><\/path><path d=\"m14 14 2.5 2.5a1 1 0 1 0 3-3l-3.88-3.88a3 3 0 0 0-4.24 0l-.88.88a1 1 0 1 1-3-3l2.81-2.81a5.79 5.79 0 0 1 7.06-.87l.47.28a2 2 0 0 0 1.42.25L21 4\"><\/path><path d=\"m21 3 1 11h-2\"><\/path><path d=\"M3 3 2 14l6.5 6.5a1 1 0 1 0 3-3\"><\/path><path d=\"M3 4h8\"><\/path><\/svg>\n<\/div><\/div><h3 class=\"oxy-text-118-291 oxy-text od-card-title\">\nCo-Creating Solutions\n<\/h3><p class=\"oxy-text-118-292 oxy-text od-body\">\nWe do not just develop medicines for patients; we develop them with patients. This means involving patient experts in the design of clinical trials to help reduce participation burden and identify outcomes that are meaningful to the community.\n<\/p><\/article><article class=\"oxy-container-118-298 oxy-container od-registry-pillar-card od-approach-engagement-card\"><div class=\"oxy-container-118-295 oxy-container od-registry-pillar-icon\"><div class=\"oxy-svg-icon2-118-294 oxy-svg-icon2 od-registry-pillar-symbol\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M19 14c1.49-1.46 3-3.21 3-5.5A5.5 5.5 0 0 0 16.5 3c-1.76 0-3 .5-4.5 2-1.5-1.5-2.74-2-4.5-2A5.5 5.5 0 0 0 2 8.5c0 2.3 1.5 4.05 3 5.5l7 7Z\"><\/path><\/svg>\n<\/div><\/div><h3 class=\"oxy-text-118-296 oxy-text od-card-title\">\nEnhancing Access and Support\n<\/h3><p class=\"oxy-text-118-297 oxy-text od-body\">\nOur engagement does not end with a prescription. We work to reduce geographic and financial barriers to treatment, providing educational resources and support systems intended to help patients manage their health.\n<\/p><\/article><\/div><\/div><\/section><section class=\"oxy-container-118-310 oxy-container od-approach-banner\" aria-label=\"Patients as partners in innovation\"><img decoding=\"async\" class=\"oxy-image-118-302 oxy-image od-approach-banner-image\" src=\"https:\/\/funny-fermi.104-248-174-66.plesk.page\/wp-content\/uploads\/2026\/09\/Orphalan_web_image_5__1_-1.jpg\" alt=\"Young patient smiling with parent, representing hope and the human impact of rare disease treatment\" loading=\"lazy\"><div class=\"oxy-container-118-303 oxy-container od-approach-banner-shade\" aria-hidden=\"true\"><\/div><div class=\"oxy-container-118-309 oxy-container od-container od-approach-banner-container\"><div class=\"oxy-container-118-308 oxy-container od-approach-banner-copy\"><p class=\"oxy-text-118-304 oxy-text od-approach-banner-text\">\nPatients are not just the reason we work. They are our partners in innovation.\n<\/p><a class=\"oxy-container-link-118-307 oxy-container-link od-partner-banner-link od-approach-banner-link\" href=\"\/mission\/\" target=\"_self\"><span class=\"oxy-text-118-305 oxy-text od-link-label\">\nLearn about our mission\n<\/span><div class=\"oxy-svg-icon2-118-306 oxy-svg-icon2 od-partner-banner-arrow\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"14\" height=\"14\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M5 12h14\"><\/path><path d=\"m12 5 7 7-7 7\"><\/path><\/svg>\n<\/div><\/a><\/div><\/div><\/section><section class=\"oxy-container-118-353 oxy-container od-section\" aria-labelledby=\"approach-support-title\"><div class=\"oxy-container-118-352 oxy-container od-container\"><header class=\"oxy-container-118-314 oxy-container od-home-heading\"><div class=\"oxy-container-118-311 oxy-container od-section-marker od-marker--center\" aria-hidden=\"true\"><\/div><h2 class=\"oxy-text-118-312 oxy-text od-section-title od-approach-support-title\" id=\"approach-support-title\">\nHow We Support You\n<\/h2><p class=\"oxy-text-118-313 oxy-text od-home-heading-lead\">\nWhether you are newly diagnosed, a long-term patient or a caregiver, here are the resources and people available to you.\n<\/p><\/header><div class=\"oxy-container-118-351 oxy-container od-approach-support-grid\"><article class=\"oxy-container-118-323 oxy-container od-education-resource-card od-approach-support-card\"><div class=\"oxy-container-118-316 oxy-container od-education-resource-icon od-approach-support-icon\"><div class=\"oxy-svg-icon2-118-315 oxy-svg-icon2 od-education-symbol\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M12 7v14\"><\/path><path d=\"M3 18a1 1 0 0 1-1-1V4a1 1 0 0 1 1-1h5a4 4 0 0 1 4 4 4 4 0 0 1 4-4h5a1 1 0 0 1 1 1v13a1 1 0 0 1-1 1h-6a3 3 0 0 0-3 3 3 3 0 0 0-3-3z\"><\/path><\/svg>\n<\/div><\/div><div class=\"oxy-container-118-319 oxy-container od-approach-support-copy\"><h3 class=\"oxy-text-118-317 oxy-text od-approach-support-card-title\">\nUnderstand Your Condition\n<\/h3><p class=\"oxy-text-118-318 oxy-text od-body-small\">\nClear, accessible information about Wilson's Disease, West's Syndrome and other rare conditions we focus on.\n<\/p><\/div><a class=\"oxy-container-link-118-322 oxy-container-link od-approach-support-link\" href=\"\/disease-info\/\" target=\"_self\"><span class=\"oxy-text-118-320 oxy-text od-link-label\">\nExplore Disease Information\n<\/span><div class=\"oxy-svg-icon2-118-321 oxy-svg-icon2 od-approach-support-arrow\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M5 12h14\"><\/path><path d=\"m12 5 7 7-7 7\"><\/path><\/svg>\n<\/div><\/a><\/article><article class=\"oxy-container-118-332 oxy-container od-education-resource-card od-approach-support-card\"><div class=\"oxy-container-118-325 oxy-container od-education-resource-icon od-approach-support-icon\"><div class=\"oxy-svg-icon2-118-324 oxy-svg-icon2 od-education-symbol\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M16 21v-2a4 4 0 0 0-4-4H6a4 4 0 0 0-4 4v2\"><\/path><circle cx=\"9\" cy=\"7\" r=\"4\"><\/circle><path d=\"M22 21v-2a4 4 0 0 0-3-3.87\"><\/path><path d=\"M16 3.13a4 4 0 0 1 0 7.75\"><\/path><\/svg>\n<\/div><\/div><div class=\"oxy-container-118-328 oxy-container od-approach-support-copy\"><h3 class=\"oxy-text-118-326 oxy-text od-approach-support-card-title\">\nFind a Support Group\n<\/h3><p class=\"oxy-text-118-327 oxy-text od-body-small\">\nConnect with patient organisations and communities near you, because no one should navigate a rare disease alone.\n<\/p><\/div><a class=\"oxy-container-link-118-331 oxy-container-link od-approach-support-link\" href=\"\/patient-support-groups\/\" target=\"_self\"><span class=\"oxy-text-118-329 oxy-text od-link-label\">\nFind Support Groups\n<\/span><div class=\"oxy-svg-icon2-118-330 oxy-svg-icon2 od-approach-support-arrow\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M5 12h14\"><\/path><path d=\"m12 5 7 7-7 7\"><\/path><\/svg>\n<\/div><\/a><\/article><article class=\"oxy-container-118-341 oxy-container od-education-resource-card od-approach-support-card\"><div class=\"oxy-container-118-334 oxy-container od-education-resource-icon od-approach-support-icon\"><div class=\"oxy-svg-icon2-118-333 oxy-svg-icon2 od-education-symbol\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M20 13c0 5-3.5 7.5-7.66 8.95a1 1 0 0 1-.67-.01C7.5 20.5 4 18 4 13V6a1 1 0 0 1 1-1c2 0 4.5-1.2 6.24-2.72a1.17 1.17 0 0 1 1.52 0C14.51 3.81 17 5 19 5a1 1 0 0 1 1 1z\"><\/path><\/svg>\n<\/div><\/div><div class=\"oxy-container-118-337 oxy-container od-approach-support-copy\"><h3 class=\"oxy-text-118-335 oxy-text od-approach-support-card-title\">\nStay Safe on Treatment\n<\/h3><p class=\"oxy-text-118-336 oxy-text od-body-small\">\nPractical guidance on taking your medicine safely, recognising side effects and what to do if you have concerns.\n<\/p><\/div><a class=\"oxy-container-link-118-340 oxy-container-link od-approach-support-link\" href=\"\/safety-information\/\" target=\"_self\"><span class=\"oxy-text-118-338 oxy-text od-link-label\">\nSafety Information\n<\/span><div class=\"oxy-svg-icon2-118-339 oxy-svg-icon2 od-approach-support-arrow\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M5 12h14\"><\/path><path d=\"m12 5 7 7-7 7\"><\/path><\/svg>\n<\/div><\/a><\/article><article class=\"oxy-container-118-350 oxy-container od-education-resource-card od-approach-support-card\"><div class=\"oxy-container-118-343 oxy-container od-education-resource-icon od-approach-support-icon\"><div class=\"oxy-svg-icon2-118-342 oxy-svg-icon2 od-education-symbol\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M7.9 20A9 9 0 1 0 4 16.1L2 22Z\"><\/path><\/svg>\n<\/div><\/div><div class=\"oxy-container-118-346 oxy-container od-approach-support-copy\"><h3 class=\"oxy-text-118-344 oxy-text od-approach-support-card-title\">\nGet in Touch\n<\/h3><p class=\"oxy-text-118-345 oxy-text od-body-small\">\nWhether you have a question, a concern or simply want to share your experience, our team is here to listen.\n<\/p><\/div><a class=\"oxy-container-link-118-349 oxy-container-link od-approach-support-link\" href=\"\/contact\/\" target=\"_self\"><span class=\"oxy-text-118-347 oxy-text od-link-label\">\nContact Us\n<\/span><div class=\"oxy-svg-icon2-118-348 oxy-svg-icon2 od-approach-support-arrow\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M5 12h14\"><\/path><path d=\"m12 5 7 7-7 7\"><\/path><\/svg>\n<\/div><\/a><\/article><\/div><\/div><\/section><section class=\"oxy-container-118-369 oxy-container od-section od-section--muted\" aria-labelledby=\"approach-partnerships-title\"><div class=\"oxy-container-118-368 oxy-container od-container\"><header class=\"oxy-container-118-357 oxy-container od-home-heading\"><div class=\"oxy-container-118-354 oxy-container od-section-marker od-marker--center\" aria-hidden=\"true\"><\/div><h2 class=\"oxy-text-118-355 oxy-text od-home-heading-title od-approach-heading--fixed\" id=\"approach-partnerships-title\">\nStronger Together\n<\/h2><p class=\"oxy-text-118-356 oxy-text od-home-heading-lead od-approach-heading-lead\">\nPartnerships with Patient Organisations\n<\/p><\/header><div class=\"oxy-container-118-367 oxy-container od-approach-partnership-card\"><div class=\"oxy-container-118-366 oxy-container od-approach-partnership-grid\"><div class=\"oxy-container-118-359 oxy-container od-approach-partnership-media\"><img decoding=\"async\" class=\"oxy-image-118-358 oxy-image od-approach-partnership-image\" src=\"https:\/\/funny-fermi.104-248-174-66.plesk.page\/wp-content\/uploads\/2026\/09\/pexels-marko-tuokko-2965017-scaled.jpg\" alt=\"Young child laughing joyfully\" loading=\"lazy\"><\/div><div class=\"oxy-container-118-365 oxy-container od-approach-partnership-copy\"><p class=\"oxy-text-118-360 oxy-text od-iir-large-copy\">\nOrphalan is proud to collaborate with global and local rare disease organisations. These partnerships allow us to support disease awareness campaigns, contribute to patient registries (like the iWilson's Disease Registry) and advocate for policy changes that improve the lives of those living with unmet medical needs.\n<\/p><p class=\"oxy-text-118-361 oxy-text od-iir-large-copy\">\nThrough these collaborations, we amplify the voices of patients and caregivers, working together to create meaningful change in the rare disease landscape. Our partnerships are built on mutual respect, shared goals and a commitment to putting patients first.\n<\/p><a class=\"oxy-container-link-118-364 oxy-container-link od-button od-home-control od-home-control--navy od-home-control--regular od-approach-partnership-action\" href=\"\/patient-support-groups\/\" target=\"_self\"><span class=\"oxy-text-118-362 oxy-text od-link-label\">\nFind a Patient Support Group\n<\/span><div class=\"oxy-svg-icon2-118-363 oxy-svg-icon2 od-link-icon\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M5 12h14\"><\/path><path d=\"m12 5 7 7-7 7\"><\/path><\/svg>\n<\/div><\/a><\/div><\/div><\/div><\/div><\/section><section class=\"oxy-container-118-380 oxy-container od-section od-section--muted\" aria-labelledby=\"approach-trust-title\"><div class=\"oxy-container-118-379 oxy-container od-container od-approach-trust-container\"><div class=\"oxy-container-118-370 oxy-container od-section-marker\" aria-hidden=\"true\"><\/div><h2 class=\"oxy-text-118-371 oxy-text od-section-title od-approach-trust-title\" id=\"approach-trust-title\">\nBuilt on Trust\n<\/h2><p class=\"oxy-text-118-372 oxy-text od-approach-trust-subtitle\">\nEthics and Transparency\n<\/p><article class=\"oxy-container-118-378 oxy-container od-approach-trust-panel\"><div class=\"oxy-container-118-374 oxy-container od-education-resource-icon od-approach-trust-icon\"><div class=\"oxy-svg-icon2-118-373 oxy-svg-icon2 od-education-symbol\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"M20 13c0 5-3.5 7.5-7.66 8.95a1 1 0 0 1-.67-.01C7.5 20.5 4 18 4 13V6a1 1 0 0 1 1-1c2 0 4.5-1.2 6.24-2.72a1.17 1.17 0 0 1 1.52 0C14.51 3.81 17 5 19 5a1 1 0 0 1 1 1z\"><\/path><\/svg>\n<\/div><\/div><div class=\"oxy-container-118-377 oxy-container od-approach-trust-copy\"><p class=\"oxy-text-118-375 oxy-text od-body od-iir-strong\">\nOur interactions with patient communities are governed by the highest ethical standards and transparency. We respect the independence of patient organisations and ensure all collaborations are conducted with integrity, following global regulatory guidelines to ensure a clear boundary between support and promotion.\n<\/p><p class=\"oxy-text-118-376 oxy-text od-body od-iir-strong\">\nEvery partnership is designed to benefit patients and the broader rare disease community, with full transparency in funding, objectives and outcomes. We are committed to maintaining trust through responsible and ethical engagement practices.\n<\/p><\/div><\/article><\/div><\/section><section class=\"oxy-container-118-423 oxy-container od-section od-approach-faq\" data-interactions=\"[{&quot;trigger&quot;:&quot;page_loaded&quot;,&quot;actions&quot;:[{&quot;name&quot;:&quot;javascript_function&quot;,&quot;js_function_name&quot;:&quot;orphalanApproachInit&quot;}]}]\" id=\"patient-faq\" aria-labelledby=\"approach-faq-title\"><div class=\"oxy-container-118-422 oxy-container od-container\"><header class=\"oxy-container-118-384 oxy-container od-home-heading\"><div class=\"oxy-container-118-381 oxy-container od-section-marker od-marker--center\" aria-hidden=\"true\"><\/div><h2 class=\"oxy-text-118-382 oxy-text od-approach-faq-title\" id=\"approach-faq-title\">\nWherever You Are in Your Journey\n<\/h2><p class=\"oxy-text-118-383 oxy-text od-approach-faq-subtitle\">\nAnswers to common questions, whether you are still waiting for a diagnosis or already living with a rare condition\n<\/p><\/header><div class=\"oxy-container-118-420 oxy-container od-approach-faq-list\"><article class=\"oxy-container-118-391 oxy-container od-approach-faq-item\"><h3 class=\"oxy-container-118-388 oxy-container od-approach-faq-heading\"><button class=\"oxy-container-link-118-387 oxy-container-link od-approach-faq-toggle\" target=\"_self\" data-interactions=\"[{&quot;trigger&quot;:&quot;click&quot;,&quot;prevent_default&quot;:true,&quot;actions&quot;:[{&quot;name&quot;:&quot;javascript_function&quot;,&quot;js_function_name&quot;:&quot;orphalanApproachFaq1&quot;}]}]\" id=\"approach-faq-toggle-1\" type=\"button\" aria-expanded=\"true\" aria-controls=\"approach-faq-panel-1\"><span class=\"oxy-text-118-385 oxy-text od-link-label\">\nWhat can help during a period of uncertainty or after receiving a diagnosis?\n<\/span><div class=\"oxy-svg-icon2-118-386 oxy-svg-icon2 od-approach-faq-chevron\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"m6 9 6 6 6-6\"><\/path><\/svg>\n<\/div><\/button><\/h3><div class=\"oxy-container-118-390 oxy-container od-approach-faq-panel\" id=\"approach-faq-panel-1\" role=\"region\" aria-labelledby=\"approach-faq-toggle-1\"><p class=\"oxy-text-118-389 oxy-text od-approach-faq-answer\">\nWhether you are still going through tests or have recently received a diagnosis, this can be a difficult and uncertain time. Many people find it helpful to keep a simple record of symptoms, appointments and questions as they arise, to share with their healthcare team. Your healthcare team remains the best source of guidance on what may be most useful for your specific situation.\n<\/p><\/div><\/article><article class=\"oxy-container-118-398 oxy-container od-approach-faq-item\"><h3 class=\"oxy-container-118-395 oxy-container od-approach-faq-heading\"><button class=\"oxy-container-link-118-394 oxy-container-link od-approach-faq-toggle\" target=\"_self\" data-interactions=\"[{&quot;trigger&quot;:&quot;click&quot;,&quot;prevent_default&quot;:true,&quot;actions&quot;:[{&quot;name&quot;:&quot;javascript_function&quot;,&quot;js_function_name&quot;:&quot;orphalanApproachFaq2&quot;}]}]\" id=\"approach-faq-toggle-2\" type=\"button\" aria-expanded=\"false\" aria-controls=\"approach-faq-panel-2\"><span class=\"oxy-text-118-392 oxy-text od-link-label\">\nHow can I prepare for appointments with my healthcare team?\n<\/span><div class=\"oxy-svg-icon2-118-393 oxy-svg-icon2 od-approach-faq-chevron\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"m6 9 6 6 6-6\"><\/path><\/svg>\n<\/div><\/button><\/h3><div class=\"oxy-container-118-397 oxy-container od-approach-faq-panel\" id=\"approach-faq-panel-2\" role=\"region\" aria-labelledby=\"approach-faq-toggle-2\" hidden=\"\"><p class=\"oxy-text-118-396 oxy-text od-approach-faq-answer\">\nSome people find it useful to write down symptoms and questions beforehand, and to bring a family member or friend along for support. Asking your healthcare team to explain anything that is unclear is always welcome, whether you are working toward a diagnosis or discussing an existing one.\n<\/p><\/div><\/article><article class=\"oxy-container-118-405 oxy-container od-approach-faq-item\"><h3 class=\"oxy-container-118-402 oxy-container od-approach-faq-heading\"><button class=\"oxy-container-link-118-401 oxy-container-link od-approach-faq-toggle\" target=\"_self\" data-interactions=\"[{&quot;trigger&quot;:&quot;click&quot;,&quot;prevent_default&quot;:true,&quot;actions&quot;:[{&quot;name&quot;:&quot;javascript_function&quot;,&quot;js_function_name&quot;:&quot;orphalanApproachFaq3&quot;}]}]\" id=\"approach-faq-toggle-3\" type=\"button\" aria-expanded=\"false\" aria-controls=\"approach-faq-panel-3\"><span class=\"oxy-text-118-399 oxy-text od-link-label\">\nHow can I talk to my family about what is happening, with or without a clear diagnosis?\n<\/span><div class=\"oxy-svg-icon2-118-400 oxy-svg-icon2 od-approach-faq-chevron\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"m6 9 6 6 6-6\"><\/path><\/svg>\n<\/div><\/button><\/h3><div class=\"oxy-container-118-404 oxy-container od-approach-faq-panel\" id=\"approach-faq-panel-3\" role=\"region\" aria-labelledby=\"approach-faq-toggle-3\" hidden=\"\"><p class=\"oxy-text-118-403 oxy-text od-approach-faq-answer\">\nThere is no single right way to approach this, and every family's situation is different. Some people find it helpful to share what they do know in simple terms, even while some questions remain unanswered. Healthcare teams may also be able to point families toward relevant support services during this time.\n<\/p><\/div><\/article><article class=\"oxy-container-118-412 oxy-container od-approach-faq-item\"><h3 class=\"oxy-container-118-409 oxy-container od-approach-faq-heading\"><button class=\"oxy-container-link-118-408 oxy-container-link od-approach-faq-toggle\" target=\"_self\" data-interactions=\"[{&quot;trigger&quot;:&quot;click&quot;,&quot;prevent_default&quot;:true,&quot;actions&quot;:[{&quot;name&quot;:&quot;javascript_function&quot;,&quot;js_function_name&quot;:&quot;orphalanApproachFaq4&quot;}]}]\" id=\"approach-faq-toggle-4\" type=\"button\" aria-expanded=\"false\" aria-controls=\"approach-faq-panel-4\"><span class=\"oxy-text-118-406 oxy-text od-link-label\">\nHow might I look after my emotional wellbeing during this time?\n<\/span><div class=\"oxy-svg-icon2-118-407 oxy-svg-icon2 od-approach-faq-chevron\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"m6 9 6 6 6-6\"><\/path><\/svg>\n<\/div><\/button><\/h3><div class=\"oxy-container-118-411 oxy-container od-approach-faq-panel\" id=\"approach-faq-panel-4\" role=\"region\" aria-labelledby=\"approach-faq-toggle-4\" hidden=\"\"><p class=\"oxy-text-118-410 oxy-text od-approach-faq-answer\">\nIt is common to experience a range of emotions, whether navigating uncertainty before a diagnosis or adjusting to life afterwards. Some people find it helpful to talk things through with family, friends or others who understand what they are going through, while others prefer to speak with their healthcare team about how they are feeling. Healthcare teams may also be able to signpost appropriate emotional or psychological support services, as well as relevant patient communities, in your area.\n<\/p><\/div><\/article><article class=\"oxy-container-118-419 oxy-container od-approach-faq-item\"><h3 class=\"oxy-container-118-416 oxy-container od-approach-faq-heading\"><button class=\"oxy-container-link-118-415 oxy-container-link od-approach-faq-toggle\" target=\"_self\" data-interactions=\"[{&quot;trigger&quot;:&quot;click&quot;,&quot;prevent_default&quot;:true,&quot;actions&quot;:[{&quot;name&quot;:&quot;javascript_function&quot;,&quot;js_function_name&quot;:&quot;orphalanApproachFaq5&quot;}]}]\" id=\"approach-faq-toggle-5\" type=\"button\" aria-expanded=\"false\" aria-controls=\"approach-faq-panel-5\"><span class=\"oxy-text-118-413 oxy-text od-link-label\">\nAre there communities for people at any stage of this journey?\n<\/span><div class=\"oxy-svg-icon2-118-414 oxy-svg-icon2 od-approach-faq-chevron\">\n<svg aria-hidden=\"true\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" stroke=\"currentColor\" stroke-width=\"2\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><path d=\"m6 9 6 6 6-6\"><\/path><\/svg>\n<\/div><\/button><\/h3><div class=\"oxy-container-118-418 oxy-container od-approach-faq-panel\" id=\"approach-faq-panel-5\" role=\"region\" aria-labelledby=\"approach-faq-toggle-5\" hidden=\"\"><p class=\"oxy-text-118-417 oxy-text od-approach-faq-answer\">\nYes. A number of organisations support people and families at different stages, including those still awaiting a diagnosis as well as those living with a confirmed rare condition. A healthcare team or specialist centre may be able to signpost relevant organisations or communities suited to your situation.\n<\/p><\/div><\/article><\/div><p class=\"oxy-text-118-421 oxy-text od-approach-faq-disclaimer\">\nThis information is for general guidance only and is not a substitute for professional medical advice. Always consult your doctor or specialist about your individual care.\n<\/p><\/div><\/section><aside class=\"oxy-container-118-431 oxy-container od-approval-strip\" aria-label=\"Content approval information\"><div class=\"oxy-container-118-430 oxy-container od-container\"><div class=\"oxy-container-118-429 oxy-container od-approval-layout\"><div class=\"oxy-container-118-427 oxy-container od-approval-code\"><span class=\"oxy-text-118-424 oxy-text od-approval-text\">\nMLR Approval Code: ORP-EU-2026-001\n<\/span><span class=\"oxy-text-118-425 oxy-text od-approval-text\" aria-hidden=\"true\">\n\u2022\n<\/span><span class=\"oxy-text-118-426 oxy-text od-approval-text\">\nApproved: October 2026\n<\/span><\/div><p class=\"oxy-text-118-428 oxy-text od-approval-text\">\nFor Healthcare Professionals and Patients in Europe and regions where Orphalan operates\n<\/p><\/div><\/div><\/aside><\/div><\/div><\/main>","protected":false},"excerpt":{"rendered":"<p>For Patients and Caregivers This information is intended for patients and caregivers. Always consult with your healthcare provider about your specific medical condition and treatment options. Do not start, stop or change any treatment without first consulting your doctor. Patient-Centric Approach Partnering with the rare disease community At Orphalan, patients inspire our work and serve [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_oxygen_hide_in_design_set":false,"_oxygen_tags":"","footnotes":""},"class_list":["post-118","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/fr\/wp-json\/wp\/v2\/pages\/118","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/fr\/wp-json\/wp\/v2\/comments?post=118"}],"version-history":[{"count":26,"href":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/fr\/wp-json\/wp\/v2\/pages\/118\/revisions"}],"predecessor-version":[{"id":1078,"href":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/fr\/wp-json\/wp\/v2\/pages\/118\/revisions\/1078"}],"wp:attachment":[{"href":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/fr\/wp-json\/wp\/v2\/media?parent=118"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}