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https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/d22c16e5-c2ae-4701-9ee0-07e3a2d7646e/IMG_9943+copie.JPG Organising Committee https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/510a2656-1441-4b83-8d82-0b031421e7a1/IMG_4722.jpg Organising Committee https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/a7c135ab-411c-437e-9a4f-3304693056ce/GN+%28002%29.jpg Organising Committee https://www.alportsyndromealliance.org/home daily 1.0 2026-03-25 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/92f02691-695f-4afd-acf1-4768ba843573/edited-photo.png https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/56efebfc-e59f-436d-bf39-5ee099834d78/Alport-smaller-logo.jpg https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/a86c31be-a794-49cd-a8c5-57023c7020c8/download.png https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/395b5e3c-4d69-46b0-b830-4b9e443431cd/Logo-ERKNet-white-background.png https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/1634649795673-ZRKJI5MUJDEISQSMTX9U/AlportSiena1001.jpg Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.alportsyndromealliance.org/sponsors daily 0.75 2024-11-13 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/1634556027234-7NIUM6U6C5UMWMFUEFJT/alport-uk-logo+copy.jpg https://www.alportsyndromealliance.org/advancing-treatments daily 0.75 2021-11-03 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/74d1bb38-607b-4ee8-8047-b26c0cb0cf6e/AlportSiena1018.jpg Advancing treatments - Research Develop a strategy to identify innovative research opportunities and actively promote such research studies to be conducted, research expertise and partnerships and to fund initiatives Source funding for new research initiatives, where necessary Focus on strengthening the ties between academia and industry in order to assure the alignment of each group’s needs and thus potentially enhance, accelerate and maximize success for all Ensure maximum data and information are readily available for research. This will include building international information resources such as: a global registry, a global biobank, an open sourced genetic data toolbox as well as any other information tools that may become relevant in the future The national groups will work together to pool resources, connect and build a research registry portal and biobank to provide a critical mass of accessible data for use in clinical research https://www.alportsyndromealliance.org/knowledge daily 0.75 2021-11-03 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/21f09b97-34ab-4c93-85cb-f943f8b729cc/AlportSiena2124.jpg Knowledge - Improve diagnosis & standards of care Develop up-to-date Health Guidelines and Standards of Care and make them readily accessible for physicians Create tools (such as natural history studies) in order to continuously support our Health Guidelines and Standards of Care with accurate and well studied data Actively promote early diagnosis by disseminating information about this rare disease to physicians and set specific targets to improve global early diagnosis for all individuals affected Develop an education plan to create a better understanding of Alport Syndrome and a better quality of life for Alport patients. https://www.alportsyndromealliance.org/globalnetwork daily 0.75 2021-11-03 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/6fab962a-79dc-48ab-a626-1f2b21a197d7/AlportSiena2276.jpg Global network - Expand global outreach Promote and assist the development of new national patient organizations. Contribute and participate in the global rare disease agenda and with other health issues related to the kidney (dialysis, transplant, genetic issues) and other related issues in eyes and ears Ensure that patient priorities and unmet needs are addressed in the global research agenda Support medical symposiums to inform clinicians (eg geneticists, nephrologists etc) about current diagnosis and treatment guidelines Support international research workshops to align the strategies of all stakeholders Work with government stakeholders to raise the profile of Alport Syndrome https://www.alportsyndromealliance.org/posterabstractssub daily 0.75 2026-03-25 https://www.alportsyndromealliance.org/aboutus daily 0.75 2026-02-23 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/1634546691209-IYB3I4CEQL634R822H40/ASA+MASTER.png About us - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/86c09fc1-abf2-4309-9ed3-bc2e8f542ab1/3R7A1618.JPG%7Etplv-9lv23dm2t1-resize-animforce-v1_1600_3000_gif.jpg About us - A global network We will be a voice for those living with Alport Syndrome, raising awareness and understanding of the condition, advocating the need to advance research into therapies and growing a sense of community. Read more… https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/d62687e4-84d6-42a6-b6fd-27434f1fdbe5/AlportSiena1046.jpg About us - Advancing treatments We will drive the research agenda in order to advance biomedical research and clinical trials to find new therapies, in collaboration with scientists, academics and pharma companies. Read more… https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/057da469-4e50-4afb-9176-0ced1cd78460/3R7A1287.JPG%7Etplv-9lv23dm2t1-resize-animforce-v1_1600_3000_gif.jpg About us - Knowledge We will be a conduit for the dissemination of up to date, accessible information to patients and clinicians in order to improve diagnosis and treatment. Read more… https://www.alportsyndromealliance.org/registration daily 0.75 2026-03-25 https://www.alportsyndromealliance.org/questions daily 0.75 2026-03-12 https://www.alportsyndromealliance.org/thank-you-2 daily 0.75 2023-01-31 https://www.alportsyndromealliance.org/patient-registry-information daily 0.75 2023-12-20 https://www.alportsyndromealliance.org/projects daily 0.75 2025-04-07 https://www.alportsyndromealliance.org/international-attendees daily 0.75 2026-03-26 https://www.alportsyndromealliance.org/payment daily 0.75 2026-03-25 https://www.alportsyndromealliance.org/payment/p/patient-or-patient-family-full-workshop monthly 0.5 2026-02-18 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/3ffaa104-af63-411c-80e5-0b3ca4ca9fdd/4.jpg Payment - Patient or patient family – full workshop - 4.jpg https://www.alportsyndromealliance.org/payment/p/local-clinicians-working-in-china monthly 0.5 2026-02-18 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/1659022001327-NQP94QY5L0CYLAKK8DUT/10.png Payment - Local clinicians and laboratory scientists working in Hungary https://www.alportsyndromealliance.org/payment/p/reduced-rate-students-retireesclinicians-from-low-and-middle-income-countries monthly 0.5 2026-03-12 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/1659022001327-NQP94QY5L0CYLAKK8DUT/10.png Payment - Students, Retirees/Clinicians from low and middle-income countries https://www.alportsyndromealliance.org/payment/p/patientpatient-familystudent monthly 0.5 2026-02-18 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/1656344387420-R74QXXWQMHW2UP53U2II/4.png Payment - Patient or patient family - patient day only https://www.alportsyndromealliance.org/payment/p/standard-registration monthly 0.5 2026-02-18 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/1659021668024-742CWL77O3MDHZ2FB3S1/5.png Payment - Standard registration fee - Clinicians and laboratory scientists https://www.alportsyndromealliance.org/payment/p/pharmaceutical-registration-7nty8 monthly 0.5 2023-01-31 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/1660051277318-6TA0TGI3KIXVX0XAQXGP/7.png Payment - In person - Sponsor https://www.alportsyndromealliance.org/payment/p/pharmaceutical-registration-tchhf monthly 0.5 2026-03-12 https://images.squarespace-cdn.com/content/v1/61522d7161e14532db2ec4ef/1659022052485-TKT2UGQDP0UQ1NQFAD0D/2.png Payment - Pharmaceutical company representatives not sponsoring workshop