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SUMMARY:Rare Disease Day at NIH 2023
DESCRIPTION:Rare Disease Day®(link is external) takes place worldwide\, typically on or near the last day of February each year\, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Since 2011\, NCATS and the NIH Clinical Center have sponsored Rare Disease Day at NIH as part of this global observance. Rare Disease Day at NIH aims to raise awareness about rare diseases\, the people they affect\, and NIH collaborations that address scientific challenges and advance research for new treatments. \nThe goals of Rare Disease Day at NIH are to: \n\nDemonstrate the NIH commitment to helping people with rare diseases through research.\nHighlight NIH-supported rare diseases research and the development of diagnostics and treatments.\nInitiate a mutually beneficial dialogue among the rare diseases community.\nExchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.\nShine a spotlight on stories told by people living with a rare disease\, their families and their communities.\nBring together a broad audience including patients\, patient advocates\, caregivers\, health care providers\, researchers\, trainees\, students\, industry representatives and government staff.\n\nEvent Details \nRare Disease Day at NIH will be held in person at NIH Main Campus (Natcher Conference Center) on Tuesday\, Feb. 28\, 2023\, from 9 a.m. to 5 p.m. EST. There also will be a virtual livestream via NIH VideoCast with the event archived for replay afterward. The event agenda features panel discussions\, rare diseases stories\, exhibitors and scientific posters. The event is free and open to the public. \nPartners in Planning \nPlanning committee members includes representatives from the following organizations: \n\nNCATS\nNIH Clinical Center\nNational Cancer Institute\nNational Heart\, Lung\, and Blood Institute\nNational Institute on Alcohol Abuse and Alcoholism\nNational Institute of Neurological Disorders and Stroke\nRare Diseases Clinical Research Network’s Coalition of Patient Advocacy Groups\nU.S. Food and Drug Administration (FDA)\nThe Children’s Inn at NIH\nEveryLife Foundation for Rare Diseases\nNational Organization for Rare Disorders\nUnited BioSource LLC\n\nNCATS and Rare Diseases Research \nProgress in data science and an increased understanding of disease genetics lead experts to agree that more than an estimated 10\,000 rare diseases are affecting about 30 million people in the United States. Most of these people are children. In all\, nearly 10% of the U.S. population have a rare disease. Rare diseases often are difficult to diagnose — it can take years. Even after an accurate diagnosis\, treatment often is not available because fewer than 500 rare diseases have FDA-approved treatments. Research led by NCATS suggests that nationwide medical costs for individuals with rare diseases are likely as high as those faced by people with common diseases\, such as cancer and heart failure. \nNCATS is committed to using research to address the public health crisis presented by rare diseases. NCATS’ Division of Rare Diseases Research Innovation (DRDRI) facilitates and coordinates NIH-wide research activities\, which have the potential to speed development of treatments for multiple rare diseases and ultimately help more patients more quickly. Learn more about DRDRI and NCATS’ rare diseases research programs and access shareable resources to help raise awareness about rare diseases.
URL:https://www.sumairafoundation.org/event/rare-disease-day-at-nih-2023/
LOCATION:Virtual: United States\, United States
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DTSTART;TZID=America/New_York:20230228T083000
DTEND;TZID=America/New_York:20230228T110000
DTSTAMP:20260425T105238
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SUMMARY:2023 Ohio Rare Disease Day Event - Cleveland
DESCRIPTION:The Ohio Rare Action Network invites you to join us for\nRare Disease Day in Cleveland\nTuesday\, February 28\, 2023 at 8:30 AM\nCase Western Reserve University\, Tinkham Veale Ballroom\, 11038 Bellflower Road\, Cleveland\, OH 44106 \nYou’re invited to join patients\, caregivers\, and other rare disease advocates as we raise awareness and celebrate the rare disease community! The Ohio Rare Action Network and the Connor B. Judge Foundation will be hosting Ohio Rare Disease Day 2023 in Cleveland on Tuesday\, February 28th. Along with NORD\, The Connor B. Judge Foundation and The Sumaira Foundation\, this year’s event is also hosted and sponsored by the Research Institute for Children’s Health. \nThe event will include networking\, followed by an informational program. The program will include a series of short presentations\, which will address the challenges surrounding the diagnosis and treatment of rare diseases and lack of approved treatment options. The program will also feature the patient perspective and highlight advocacy and legislative efforts.
URL:https://www.sumairafoundation.org/event/2023-ohio-rare-disease-day-event-cleveland/
LOCATION:Case Western Reserve University\, Tinkham Veale Ballroom\, 11038 Bellflower Road\, Cleaveland\, OH\, 44106\, United States
CATEGORIES:Partner Events
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DTSTART;TZID=Europe/Brussels:20230228T100000
DTEND;TZID=Europe/Brussels:20230228T180000
DTSTAMP:20260425T105238
CREATED:20230221T210818Z
LAST-MODIFIED:20230222T204539Z
UID:12985-1677578400-1677607200@www.sumairafoundation.org
SUMMARY:MEET YOUR EXPERTS – Triff deine Experten!
DESCRIPTION:MEET YOUR EXPERTS –\nTriff deine Experten!\nZum Tag der seltenen Erkrankungen 2023\nlädt NEMOS ein zum offenen Gespräch\nWann: 28. Februar 2023\nDurchgängig zwischen\n10 und 18 Uhr\nWie: Einfach vorbeischauen!\nOnline (via Zoom) ohne Anmeldung über folgenden Link: https://bit.ly/meet-NEMOS-experts\n@Was?\nMit Expertinnen und Experten ins Gespräch kommen\,\nFragen stellen\, Gelegenheit zum offenen Austausch\,\nInfo-Schnipsel kurz nach jeder vollen StundeFür alle Betroffenen und Interessierten\nrund um die Themen NMOSD und MOGADWeitere Infos unter www.nemos-net.de\nFür Rückfragen: PatientInnen@nemos-net.de
URL:https://www.sumairafoundation.org/event/meet-your-experts-triff-deine-experten/
LOCATION:Virtual: Germany\, Germany
CATEGORIES:Partner Events
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