Marriott Marquis in Washington, DC, NORD Leads the Way: 900+ Influential Rare Disease Stakeholders from FDA, Patient Organizations, and Industry Gather for #NORDSummit 2023. Suite 500 Our mission is to promote inter-professional healthcare education and awareness of and , Continue reading "2023 Rare Disease Day Symposium at the Frank H. Netter MD School of Medicine", 1900 Crown Colony Drive The site is secure. 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If you would like to find out more about how we manage your personal information please see our privacy policy. Please note that NORD provides this information for the benefit of the rare disease community. Shine a spotlight on stories told by people living with a rare disease, their families and their communities. Explore a selection of reports that spotlight particular areas of research at the Crick over the past five years. Athanasios VOZIKIS, Professor, Director of LabHEM, University of Piraeus, Department of Economics WORLDSymposium is a medical education conference focused on lysosomal diseases. National Heart, Lung, and Blood Institute, National Institute on Alcohol Abuse and Alcoholism, National Institute of Neurological Disorders and Stroke, Rare Diseases Clinical Research Networks Coalition of Patient Advocacy Groups. Learn more about how you can attend this event or add it to your calendar. Assess and understand application challenges with current technology features. WebThe 6th Annual Gene Therapy for Rare Disorders 2023 Summit remains devoted to showcasing the top case studies and strategic learnings from the past year. 13 - 14 September 2023 Princeton, New Jersey Register Why attend? We invite you to join us for the 14th Annual Conference on Advancing Rare Disease Research, Therapy, and Patient Advocacy on March 3-4, 2023 in the Jordan Third International Summit on Human Genome Editing Previous Events; Today Next Events; 1st International UAE Rare Disease Society Congress Feb 28 February 28 - March 1. By continuing to use this website, we assume you agree to our, Click Here to Register or Modify Your Registration. Prof Veronica Kinsler, Professor of Paediatric Dermatology and Dermatogenetics, Paul Nioi, Vice President, Discovery and Translational Research. Quincy, MA 02169 MA 02199 February 13, 2023 Speaker and Abstract Submissions Open, March 10, 2023 Speaker Submission Deadline, March 15, 2023 Scholarship Application Window Opens, September 5, 2023 Early Bird Registration Closes, July 14, 2023 Abstract Submission Deadline, August 15, 2023 Abstract Decision Notifications by NORD, September 22, 2023 Hotel Room Block Closes, October 15, 2023 NORD Rare Diseases & Orphan Products Breakthrough Summit Welcome Reception, October 16 -17, 2023 NORD Rare Diseases & Orphan Products Breakthrough Summit, What an incredible lineup of speakers. Volunteer. Visit our exhibition on genome editing from 11 February 2023. This years conference will include presentations on next generation technology, long-read genome sequencing, patient empowerment and health equity, and more. All attendees who registered for On Demand will receive an email with a link to access the On Demand platform starting Monday, February 27 until Friday, March 31, 2023. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder. Read more: https://bit.ly/3tGXzXn, Read the @RareDiseases Summit 2022 Recap! 1779 Massachusetts Avenue Date: Tuesday, April 25, 2023 Time: 4:00 p.m. - 5:15 p.m. Greenwich Mean Time Venue: ETC Venues, 155 Bishopsgate, London, England EC2M 3YD About BioTrinity BioTrinity is a London conference that catalyzes growth and supports in-person re-engagement across the life sciences industry. The 3rd International Conference on Rare Diseases organized by Rare Diseases Greece (RDG), 95 Rare Alliance Greece and Boussias, following the World Rare Disease Day 2023, will take place on [] Phone: 203-263-9938 iBIO invites you to join patients, families, caregivers and other rare disease community members at this important event to educate Illinois legislators and the general public on the challenges faced by rare disease patients and their families. Join the National Organization for Rare Disorders (NORD) October 15-17, 2023 for the Rare Diseases and Orphan Products Breakthrough Summit. Illinois Rare Disease Day at the capital brings together rare disease advocates from across the state to make , Continue reading "2023 Illinois Rare Disease Day at the Capital". A global community in the heart of London. Come face to face with life-changing science, Engage and inspire with discovery science, The latest science and stories from the Crick, Working to discover the biology of health and disease. NCATS is committed to using research to address the public health crisis presented by rare diseases. We are a biomedical discoveryinstituteresearching the biologyunderlying human health. Summary. 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 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. Save the date for NORD Summit 2023, set for October 16-17, 2023 in Washington, DC! The goal of WORLDSymposium is to provide an interdisciplinary forum to explore and discuss specific areas of interest, research and clinical applicability related to lysosomal diseases. Join us for three days in Sheraton Harbor Island, 1380 Harbor Island Dr, San Diego, CA 92101. By submitting, you agree to receive email communications from Terrapinn, including upcoming promotions and discounted tickets and news. The conference will start at approximately 13:00 on Monday 24 April 2023 and close at approximately 14:30 on Wednesday 26 April 2023. Events will run over a span of time during the conference depending on the number and length of the presentations. How are you raising awareness for the rare community this Rare Disease Day? Google Calendar. Rare Disease Conferences 2023/2024/2025 is an indexed listing of upcoming meetings, seminars, congresses, workshops, programs, continuing CME courses, trainings, summits, and weekly, annual or monthly symposiums. Your meeting registration confirmation will include a link to generate a customized letter of invitation, which can be used when applying for a visa. This will coordinate appears, disperse information, and meet with recurring pattern and potential investigators and get name affirmation at First Virtual Conference. The World Orphan Drug Congress USA is a place where innovation and expertise is showcased, solutions are found and learning is done. Featuring content on the most critical rare issues including accelerated approval, newborn screening, equitable access to care the 2022 NORD Summit was host to a week of conversations and collaborations in the global community. The conference is a place to meet and brainstorm ways to advance orphan drug development and improve access to life-saving therapies. Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. The Francis Crick Institute Limited is a registered charity in England and Wales no. Download the presentation, Mari MUREL, ERICA Project Manager Event is from 2:00pm -4:00 pm There is no cost to participants to attend this event One of the greatest challenges individuals living with a rare disease, their families, and patient advocates have is finding and accessing information , Join the Jamals Helping Hands (JHH) five-year anniversary, Building Bridges to the Future, honoring their community, resilience, and strength. FDA will host Rare Disease Day, a virtual public meeting, on February 27, 2023, 9:00 am 4:45 pm ET, in global observance of Rare Disease Week. wAIHA Warriors is providing travel , Continue reading "wAIHA Warriors Annual Patient Meeting", Since 2015, the Frank H. Netter MD School of Medicine at Quinnipiac University has hosted the Rare Disease Day Symposium, providing an opportunity for patients, family members, clinicians, and researchers to share their stories, research and insights into the development of novel therapeutics. FDA will host Rare Disease Day, a virtual public meeting, on February 27, 2023, 9:00 am 4:45 pm ET, in global observance of Rare Disease Week. This website uses cookies to improve your experience. Hanson Wade's goal is to accelerate progress within organisations and across industries. Jaguar Health to Present at BioTrinity 2023 Conferences R&D Spotlight on Rare Diseases - read this article along with other careers information, tips and advice on WebInternational Conference on Rare Diseases 2023. November 15, 2022Notification of abstract acceptance for poster or platform presentation at WORLDSymposium 2023. Workshops, Public meeting: FDA Rare Disease Day 2023, An official website of the United States government, : 15 16 Mar, 2023 Onsite & Online , Meet us at the World Rare Disease Day Conference in Medina, Saudi Arabia, on March 15-16, 2023 to learn more about how we work together with patients, physicians, and pharma partners to deliver data-driven, life-changing answers in rare and neurodegenerative diseases. FDA will host Rare Disease Day, a virtual public meeting, on February 27, 2023, 9:00 am 4:45 pm ET, in global observance of Rare Disease Week. By continuing to use this website, you agree to the Terms of Service & Privacy Policy, A Podcast For The Rare Disease Community, Policy Statements & Letters to Policymakers. NEMSNs Board had picked out six of them as particularly relevant to us. WebRare Disease Conference 2023 - Rare Disease Innovation & Partnership Summit informaconnect.com Thank you for the opportunity to present on the vitally important topic of transition of care., NEMSNs Board thanks you very kindly for your scholarship to our organization to attend the 2020 Rare Summit. Translate technological capabilities into clinical applications, relevant to daily practice. 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. All Info for H.Res.181 - 118th Congress (2023-2024): Expressing support for the designation of February 28, 2023, as "Rare Disease Day". How competent are lay professionals in addressing womens issues? Challenges faced by lay professionals in the community, Certificates will be provided to all speakers, delegates and students, Opportunity to meet worlds renowned at this event, Keynote forums by Prominent Physicians & Professors, Best platform for Global business and networking opportunities, Oral/Poster presentations by Young Researchers. Before sharing sensitive information, make sure you're on a federal government site. ContactOOPDOrphanEvents@fda.hhs.gov | 301-796-7634 Rare Diseases in the XXI Century Scientific Conference. Google Calendar iCalendar Outlook 365 Outlook Live Details Date: February 27 Time: 9:00 am - 4:45 pm EST Event Category: NORD Sponsored Rare Disease Day Event Website: Crickresearchers are working at the forefront of the scientific response to answer some of the most urgent questions about the SARS-CoV-2 pathogen, from how we can improve testing, to why its deadly in some people but causes no symptoms in others. Engage with the FDA to provide your perspectives as a patient, caregiver or family member. Brain Injury Alliance of Thank you to all the folks at NORD for your remarkable efforts to make this such a success.. This conference is aimed at scientists, clinician scientists and doctors. Each year, WORLDSymposium hosts a scientific meeting presenting the latest information from basic science, translational research, and clinical trials for lysosomal diseases. Thank you for the well-organized machinery that allowed us opportunities to arrange meetings. Overcome Regulatory, Clinical, Manufacturing & Pricing Bottlenecks to Progress Safer, Efficacious, Accessible Rare Gene Therapies From Early Clinical Development Through to Approval, 2022 has been a landmark year for the global gene therapy space. WORLD is an acronym that stands for Were Organizing Research on Lysosomal Diseases. Presentations. Each year, WORLDSymposiumrecognizes one individual for innovation and accomplishment in the field of lysosomal disease research and therapy. 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. I was able to watch a little in person and then I was able to access NORDs session files. WORLDSymposium and the Lysosomal Disease Network (LDN) are separate and independent entities and are not affiliated in any way. Rare Disease Day at NIH 2023 Tuesday, February 28, 2023, 9:00am to 5:00pm (registration required) NIH Natcher Conference Center (Building 45) Rare Disease Day 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 With Stay Informed With NORDs Email Newsletter, "Skate Under the Stars: A Rare Disease Celebration", "2023 Illinois Rare Disease Day at the Capital", "The 2nd Annual CHOC and UCI Rare Disease Symposium & Family Conference", "Building Bridges to the Future: Jamals Helping Hands Anniversary BBQ", "Rare Disease Innovation & Partnership Summit", Renaissance New Orleans Pere Marquette French Quarter, "2023 Rare Disease Day Symposium at the Frank H. Netter MD School of Medicine", Launching Registries & Natural History Studies, Skate Under the Stars: A Rare Disease Celebration, CHOC Rare Disease Grand Rounds: Pyridoxine Dependent Epilepsy (PDE), 2023 Illinois Rare Disease Day at the Capital, The 2nd Annual CHOC and UCI Rare Disease Symposium & Family Conference, Building Bridges to the Future: Jamals Helping Hands Anniversary BBQ, Rare Disease Innovation & Partnership Summit, 2023 Rare Disease Day Symposium at the Frank H. Netter MD School of Medicine. Rare Disease Therapies Development IL, Virtual Summit. WebThe Second Annual CHOC and UCI Rare Disease Symposium & Family Conference will bring together over 100 advocates, researchers, clinicians, students, and families to Details of Biomarkers 2023 Conferences in Canada Biomarkers 2023 Massachusetts Biotechnology Council 700 Technology Square, 5th Floor Cambridge, MA 02139 617.674.5100 4 min read. Planning committee members included representatives from the following organizations: Progress 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. 2nd Crick Rare Diseases Conference | Crick 28 February 2023 09:00 - 17:00 The Francis Crick Institute Symposia Register on Eventbrite What's on Expert WebVideo: Rare Disease Day Conference 2023 | Akron Children's Hospital. E:info@hansonwade.com, Sheraton Boston Hotel This will be an in-person meeting only. Rare Disease conference listings are indexed in scientific databases like Google Scholar, Semantic Scholar, Zenedo, OpenAIRE, EBSCO, BASE, WorldCAT, Sherpa/RoMEO, Compendex, Elsevier, Scopus, Thomson Reuters (Web of Science), RCSI Library, UGC Approved Journals, ACM, CAS, ACTA, CASSI, ISI, SCI, ESCI, SCIE, Springer, Wiley, Taylor Francis, and The Science Citation Index (SCI). WebThis conference is a must attend event for thought leaders, advocates, researchers and industry executives trailblazing novel solution-driven pathways for the future of gene therapy and rare disease innovation. Each year, Global Genes convenes one of the worlds largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, All Info for H.Res.181 - 118th Congress (2023-2024): Expressing support for the designation of February 28, 2023, as "Rare Disease Day". Keep up-to-date on the latest NORD Summit news, Director of Development and Strategic Partnerships, The Myositis Association, Lois Vierk, President, National Eosinophilia Myalgia Syndrome Network, Susan Fernbach, RN, Director of Genetic Outreach, Baylor College of Medicine and member of NORDs Summit Advisory Committee. 2020 Challenge Details, Translational Science Education & Training, Translational Science Training at Partner Institutions, Translational Science Training and Education Resources, Drug Discovery, Development and Deployment Maps, Assay Development and Screening Technology (ADST), Bridging Interventional Development Gaps (BrIDGs), Discovering New Therapeutic Uses for Existing Molecules, Genetic and Rare Diseases Information Center (GARD), A Specialized Platform for Innovative Research Exploration (ASPIRE), A Translational Approach to Addressing COVID-19, Clinical Trial Readiness for Rare Diseases, Disorders and Syndromes, Multidisciplinary Machine-Assisted, Genomic Analysis and Clinical Approaches to Shortening the Rare Diseases Diagnostic Odyssey, The Accelerating Medicines Partnership Bespoke Gene Therapy Consortium (BGTC), Cures Acceleration Network (CAN) Review Board, Division of Rare Diseases Research Innovation (DRDRI), access shareable resources to help raise awareness about rare diseases. Join us virtually or in-person on March 10 for the 10th Annual Rare Disease Symposium. Rare Disease Conferences 2023/2024/2025 will bring speakers from Asia, Africa, North America, South America, Antarctica, Europe, and Australia. Understand considerations and challenges associated with clinical trials in small populations. 500+ leading experts from innovative biotechs, large pharma, academia and key service providers will be reuniting in Boston for 2023 to capitalize on recent success stories and collaborate over the most pressing industry challenges. Phone: 617-249-7300, Danbury, CT office The event will be shared in multiple Facebook support groups for individuals specifically with PKU. The World Orphan Drug Congress brings together leading pharmaceutical and biotech companies, government and regulatory authorities, patient advocacy groups, payers, investors and solution providers. Bring together a broad audience including patients, patient advocates, caregivers, health care providers, researchers, trainees, students, industry representatives and government staff. WebThe joint event RE(ACT) Congress and IRDiRC Conference 2023 aims to bring together scientific leaders and experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss rare diseases research policies. Read full announcement here. Event Details. By App. The International Research Conference Aims and Objectives. Danbury, CT 06810 This free family-friendly BBQ will feature live music, a kid's zone, food trucks, educational resources, and more! The. This exciting event brings together over 900 rare disease advocates, experts, and stakeholders from around the world to tackle the most pressing issues facing the rare disease community. Please enable JavaScript in your web browser to get the best experience. How To Help A Family Member With Mental Illness, How School Affects Mental Health In High School Students, Empowering community members through mental health education, advocacy, and support, Effects of Financial Illiteracy on Physical, Mental, Emotional, Spiritual Health. Contribute to driving and directing the fast growing field of Health. Led by 60+ expert speakers and together with your peers, , Continue reading "Rare Disease Innovation & Partnership Summit", The first ever wAIHA Warriors Annual Patient Meeting will take place from March 24-26, 2023, in New Orleans. After reviewing numerous nominations, and considering many amazing individuals, the WORLDSymposium2023 Awards Committee has selectedWilliam A. Gahl, MD, PhD, as the recipient of the2023 Roscoe O. Brady Award. Hot off its heels we saw the accelerated approval of another bluebird bio product, Skysona. All Info for H.Res.181 - 118th Congress (2023-2024): Expressing support for the designation of February 28, 2023, as "Rare Disease Day". WebMarketsandMarkets Infectious Disease and Molecular Diagnostics Conference 22nd - 23rd June 2023 Boston, USA The Diagnostics sector has emerged as a prominent game changer in healthcare, because of many technological advancements taking United States. , Continue reading "Skate Under the Stars: A Rare Disease Celebration". Roscoe O. Brady Award Speaker: William A. Gahl, MD, PhD , Basic Science, Translational Research, ClinicalApplications, Contemporary Forum, and Late-Breaking Sessions, Emerging Trends: State-of the-Art for Experts, 2023 Scientific Sessions, ePosters and Satellite Symposia are available On Demand until. This years theme is Intersections with Rare Diseases A patient focused event. Participants will have the unique opportunity to: Public Docket THE BENEFITS PROVIDED TO THE ATTENDEES ARE: PARTICIPANTS - FIVE REASONS WHY I SHOULD ATTEND THE CONGRESS: PARTNERS - REASONS WHY I SHOULD EXHIBIT DURING THE CONGRESS: Copyright All rights reserved | Design & Developed by, Re-conceptualizing existing paradigms of diagnosis and difficulty, Breaking down silos how different models fit together. Read full announcement here. WORLDSymposiumwas pleased to announce the recipients of the 2023 New Treatment Award. View CNBC interview with NORDs Peter Saltonstall and Boston Childrens Dr. Olaf Bodamer emphasizing the importance of investment in rare diseases. Rare Disease Day 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. It also provides a premier interdisciplinary platform for researchers, practitioners and educators to present and discuss the most recent innovations, trends, and concerns as well as practical challenges encountered and solutions adopted in the fields of Rare Diseases. WebThe conference is a place to meet and brainstorm ways to advance orphan drug development and improve access to life-saving therapies. Fax: 203-263-9938, Washington, DC Office Office of Clinical Policy and Programs, Office of Orphan Products Development, More Meetings, Click here to access the Guide for Authors or to Submit Your Paper. Read full announcement here. The goals of Rare Disease Day at NIH are to: Rare Disease Day at NIH was held at NIH Main Campus (Natcher Conference Center) on Tuesday, Feb. 28, 2023, from 9 a.m. to 5 p.m. EST. WebAll MassBio events adhere to our conference Diversity Policy and Anti-Harassment Policy. The Second Annual CHOC and UCI Rare Disease Symposium & Family Conference will bring together over 100 advocates, researchers, clinicians, students, and families to share research, knowledge, experience on Rare Diseases. Boston WebHome | Leading Rare Diseases Conference | Orphan Disease Conferences | Orphan-Drugs Meetings May 25-26, 2023 10:00 AM GMT London, UK 4th International Conference on Rare Diseases and Orphan Drugs Pioneering Breakthroughs on Rare Diseases 83 : days 02 : Hours 59 : Mins 55 Secs Brochure Download Advertising Webinars WebClinical Trials in Rare Diseases 2023 We are pleased to announce the launch of a brand new event: Clinical Trials in Rare Diseases will take place on 13th-14th September 2023 in Princeton! NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Congratulations to this years recipients! FDA will host Rare Disease Day, a virtual public meeting, on February 27, 2023, 9:00 am 4:45 pm ET, in global observance of Rare Disease Week. Appraise and qualify unmet needs from clinician users. WebRare Disease Conferences 2023 2024 2025 is for the researchers, scientists, scholars, engineers, academic, scientific and university practitioners to present research activities Leveraging the momentum for a comprehensive rare disease strategy Introductory Speech: An 06885462, with its registered office at 1 Midland Road, London NW1 1AT. This year conference will comprises of major sessions designed to offer comprehensive sessions that address current issues in various field of RARE DISEASES. One of the most popular sessions at the 2022 #NORDSummit was, Mental Health & #RareCancers. This session allowed attendees the opportunity to gain insights on supporting patients & families struggling with mental health issues. Congratulations! Read full announcement here. Christines work at Cure GM1 has involved a broad range, including animal models, biomarkers, gene therapy, enzyme replacement therapy, patient registries, patient reported outcomes, newborn screening and the first-ever GM1 caregiver preferences study. Discussions will focus on Distribution of exhibitor prospectus and support opportunities to all prior supporting companies, and also available by request. Initiate a mutually beneficial dialogue among the rare diseases community. Download the presentation, International Conference on Rare Diseases 2023, Leveraging the momentum for a comprehensive rare disease strategy. Highlight NIH-supported rare diseases research and the development of diagnostics and treatments. Following last year's inaugural meeting, we are very pleased to be hosting the second Crick Rare Diseases Conference to be held at the Crick on 28 February to mark World Rare Diseases Day 2023. WORLDSymposium receives NO FUNDING of any kind from the LDN, the National Institutes of Health (NIH), or any other federal agency. Join the webcast to watch the livestream on February 27 beginning at 9 a.m. (ET). Over 830 enthusiastic attendees from across the globe convened to address and take action on the opportunities and challenges facing the rare disease community. WORLDSymposium is excited to announce the return of Peter Marks, MD, PhD, director of the Center for Biologics Evaluation and Research (CBER) at the Food and Drug Administration, as the 2023 Keynote Speaker. Terrapinn is proud to be a member of isla. Receive updates on the NORD Summits agenda, speakers, registration, and more by opting into our mailing list. WebInternational Conference on Rare Diseases 2023. Jaguar Health, Inc. By Facilitated Meetings. 3RD INTERNATIONAL RARE DISEASES CONFERENCE 2023: February 21, 2023: Robert J. Gorlin Symposium and Emerging Trends, Hilton Orlando6001 Destination ParkwayOrlando Florida, USA, 32819Phone: +1-407-313-4300Website: hilton.comWebsite: thehiltonorlando.com. WebWorld Congress on Rare Diseases - 2023 +91 83102 90512 info@worldcongressonrarediseases.com About Conference The International Research This years theme is Intersections with Rare Diseases A patient focused event.. Demonstrate the NIH commitment to helping people with rare diseases through research. FDA will host Rare Disease Day, a virtual public meeting, on February 27, 2023, 9:00 am 4:45 pm ET, in global observance of Rare Disease Week. The conference seeks to contribute to presenting novel research results in all aspects of Rare Diseases and Orphan Drugs. WebGT+R 2023 is a novel event, curating seasoned experts from across the gene therapy and rare disease therapeutic research and development industries. May 23-25, 2023 Gaylord National Resort & Convention Center Washington, D.C. Applications for the 2023 PhD programme are open! Changing lives of those with rare disease. WebRare Disease Day will be taking place on March 24, 2023 at 5:00 PM (ET). WebRare Disease Day will be taking place on March 24, 2023 at 5:00 PM (ET). Google Identify pertinent evolution of Health technologies in RARE DISEASES fields. Dr. Gahl isthe Director of the Undiagnosed Diseases Program, a Senior Investigator in the Medical Genetics Branch and the Head of the Human Biochemical Genetics Section of the National Human Genome Research Institute (NHGRI). Christine founded the Cure GM1 Foundation in April 2015 in honor of her daughter Iris and all those affected by GM1 gangliosidosis.