rare disease conference 2023

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Suite 310 A global community in the heart of London. 08:00 AM 05:00 PM UTC-12:00. Presentations. Dr. Marks Keynote Address: Taking Gene Therapy to the Next Level, was presented on Friday, February 24, 2023 at 7:30 AM EST, at the 19th Annual WORLDSymposium in Orlando, Florida. FDA Meetings, Conferences and Workshops, Recalls, Market Withdrawals and Safety Alerts, FDA Meetings, Conferences, and Workshops: Past Events, Public Calendar - Meetings With FDA Officials, Public meeting: FDA Rare Disease Day 2023 - 02/27/2023, RDD 2023 Meeting Packet Brochure 02-02-2023_final_508. Please enable JavaScript in your web browser to get the best experience. With a focus on the most critical topics, including accelerated approval, newborn screening, and equitable access to care, the 2023 NORD Summit promises a full program of productive discussions and collaborative solutions. Presentations. Our primary method for achieving this is by creating exclusive business conferences that gather together the world's smartest thinkers and doers. 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! Assess and understand application challenges with current technology features. (February 28, 2023) About Rare Disease Day Launched by EURORDIS-Rare Diseases Europe in 2008, Rare Disease Day is the patient-led international awareness campaign that brings people together in solidarity with the 300 million patients impacted 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. 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. WORLDSymposiac/o GMI1900 NW Corporate BlvdSuite 410WBoca Raton, FL 33431. Boston 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 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. Hot off its heels we saw the accelerated approval of another bluebird bio product, Skysona. All comments must be identified with the docket number FDA-2022-N-3072-0001 through April 7, 2023. Demonstrate the NIH commitment to helping people with rare diseases through research. Jaguar Health, Inc. 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. WebMENA Organization for Rare Diseases and UAE Genetic Diseases Association will conduct the MENA Organization for Rare Diseases Annual Meeting 2023 in Dubai from 3 to 5 Annual Summit on Rare Diseases and Orphan Drugs, International Conference on Rare Infectious Diseases (ICRID), International Conference on Rare Diseases and Indigenous Genetics (ICRDIG), International Conference on Orphan Drugs for Rare Diseases (ICODRD), International Conference on Clinical Genetics and Rare Diseases (ICCGRD), International Conference on Orphan Drugs, Rare Diseases and Conditions (ICODRDC), International Conference on Orphan Drugs and Rare Diseases (ICODRD), International Conference on Rare Diseases and Orphan Drugs (ICRDOD), Creative Commons Attribution 4.0 International license. Participants can join in on a virtual walk/run to raise awareness for Rare disease day (wearing stripes!). With August came the green light for bluebird bios Zynteglo in the US, the first FDA approval for a gene therapy in over three years. Download the presentation, Maria KALOGEROPOULOU, Head Value Access, Health Policy & RWE, IQVIA Hellas Read more: https://bit.ly/3tGXzXn, Read the @RareDiseases Summit 2022 Recap! WORLDSymposium is an annual research conference dedicated to lysosomal diseases. By App. Learn more about how you can attend this event or add it to your calendar. WebInternational Conference on Rare Diseases 2023. WebThe conference is a place to meet and brainstorm ways to advance orphan drug development and improve access to life-saving therapies. NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. WebRare Diseases Meet 2023 provides a premier interdisciplinary platform for researchers to present the latest research findings and describe emerging technologies, and directions in rare diseases and orphan drugs issues. Congratulations to this years recipients! Christine founded the Cure GM1 Foundation in April 2015 in honor of her daughter Iris and all those affected by GM1 gangliosidosis. Location: Bartosza Gowackiego 35, Lublin, Poland. WebRarediseases 2023 | 8th International Conference on Rare Diseases and Orphan Drugs 8 th International Conference on Rare Diseases and Orphan Drugs November 13-14, 2023 Osaka, Japan Submit Abstract Register Now Sessions & Tracks Program Schedule Reader Base Search 1000+ Events Expert speakers from across the UK Rare Diseases community will present their latest research. Rare Disease Conferences 2023/2024/2025 lists relevant events for national/international researchers, scientists, scholars, professionals, engineers, exhibitors, sponsors, academic, scientific and university practitioners to attend and present their research activities. Join us for a celebration of Rare Disease Day with an opportunity for Rare Disease Warriors to Skate Under the Stars at the Centene Community Ice Center outdoor rink in Maryland Heights, MO. By continuing to use this website, we assume you agree to our, Click Here to Register or Modify Your Registration. Webcast Information 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. February 21, 2023: Robert J. Gorlin Symposium and Emerging Trends February 22-26, 2023: Research Meeting Hilton Orlando, Orlando, FL, USA Scientific With its high quality, it provides an exceptional value for students, academics and industry researchers. The event agenda featured panel discussions, rare diseases stories, exhibitors and scientific posters. Read full announcement here. We are looking forward to gathering in person for Rare Disease Day 2023 on February 25th starting at 9:00 am at the Prince Conference Center (Grand MA 02199 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. Rare diseases often are difficult to diagnose it can take years. Event Details. ", Dr Steffen Schubert, VP Drug Discovery, Silence Therapeutics, Applying Silences siRNA therapeutic platform to treating rare diseases, DrPaul Nioi, Vice President, Discovery and Translational Research, "RNAi therapeutics for the treatment of Primary Hyperoxaluria Type 1", Professor of Genomic Medicine and Rare Diseases, University of Manchester, Clinical Lead for Rare Disease Diagnostics, Genomics England, Professor of Paediatric Metabolic Diseases, UCL and Great Ormond St Hospital for Chlidren, Professor of Molecular Ophthalmology, UCL and the Francis Crick Institute, Vice President, Discovery and Translational Research,Alnylam Pharmaceuticals, Professor of Clinical Genetics, UCL and Great Ormond St Hospital for Children, Professor of Translational Molecular Medicine, University ofEdinburgh, Professor of Haematology, University of Cambridge, Disease Models & Mechanisms | The Company of Biologists. After reviewing numerous nominations, and considering many amazing individuals, the WORLDSymposium 2023 Awards Committee has selected Christine as the recipient of the 2023 PAL Award. Athanasios VOZIKIS, Professor, Director of LabHEM, University of Piraeus, Department of Economics Download the presentation, Panagiota MITROU, Deputy Head of the Autonomous Department of Therapeutic Protocols & Patient Registries, Ministry of Health Web3RD INTERNATIONAL RARE DISEASES CONFERENCE 2023: GREEK CHAPTER Mar 6 March 6 - March 8. 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). Download the presentation, International Conference on Rare Diseases 2023, Leveraging the momentum for a comprehensive rare disease strategy. 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. Speakers Sponsors Media Centre Contact Us Register close 2023 Sponsors Included: Why attend? About Rare Disease Day . Join our mailing list to receive exclusive content and offers. 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. The theme for the conference this year is Bio Markers: Future of Medical Diagnosis and Treatment . All Info for H.Res.181 - 118th Congress (2023-2024): Expressing support for the designation of February 28, 2023, as "Rare Disease Day". On Demand Content Available to Registered Attendees Until March 31, 2023. Join our mailing lists to receive updates about our latest research and to hear about our free public events and exhibitions. 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. Join the National Organization for Rare Disorders (NORD) October 15-17, 2023 for the Rare Diseases and Orphan Products Breakthrough Summit. Google Calendar. Hear directly from the FDA on initiatives to advance medical product development for rare diseases. 2022 has been a landmark year for the global gene therapy space. We are always looking for ambitious people to join our team. By submitting, you agree to receive email communications from Terrapinn, including upcoming promotions and discounted tickets and news. Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts. 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 WebInternational Conference on Rare Diseases 2023. Summary. Download the presentation, Mari MUREL, ERICA Project Manager 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. 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. The conference seeks to contribute to presenting novel research results in all aspects of Rare Diseases and Orphan Drugs. Download the presentation, Antonis KATTAMIS, Professor of Pediatric Hematology-Oncology, President, Hellenic Society of Pediatric Hematology-Oncology Initiate a mutually beneficial dialogue among the rare diseases community. Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. October 1, 2022Deadline for abstract submission to WORLDSymposium 2023. Danbury, CT 06810 The 6th Annual Gene Therapy for Rare Disorders 2023 Summit remains devoted to showcasing the top case studies and strategic learnings from the past year. Overview, new treatments, and the potential for Newborn Screening for Pyridoxine Dependent Epilepsy (PDE) Speaker: Curtis R. Coughlin II, PhD, MS, MBE CHOC Grand Rounds is part of the CHOC UCI Rare Disease Day. May 23-25, 2023 Gaylord National Resort & Convention Center Washington, D.C. WebRare Disease Conference 2023 - Rare Disease Innovation & Partnership Summit informaconnect.com Davide Zecchin and Sara Barbera Martin (Senior Post-Doctoral Research Associates, Kinsler lab, Francis Crick Institute), Prof Rob Semple, Professor of Translational Molecular Medicine, University of Edinburgh, What causes insulin resistance, and what can we do about it?, Prof Steve Hart, Professor in Molecular Genetics, UCL, Dr Helen Brittain, Clinical Lead for Rare Disease Diagnostics, Genomics England, "The 100,000 Genomes Project and beyond: An update on Rare Disease Diagnosis and Research", Prof Sergi Castellano, Professor of Genomics, UCL, Prof Hannah Mitchison, Professor of Molecular Medicine, UCL, "Rare genetic respiratory diseases and targeting genetic therapies to the airways", Prof Alan Warren, Professor of Haematology, University of Cambridge, "Convergent somatic evolution commences in utero in a germline ribosomopathy", Prof Veronica Kinsler, Professor of Paediatric Dermatology and Dermatogenetics, GOSH, UCL and the Francis Crick Institute, Maanasa Polubothu (clinical academic PI, UCL and consultant Great Ormond St) and Dale Bryant (senior post-doctoral research associates, Kinsler lab, Francis Crick Institute), Dr Antoine de Fougerolles, CEO Evox Therapeutics, "Exosome therapeutics: creating and enabling genetic medicines", Prof Mina Ryten, Professor of Clinical Genetics, GOSH and UCL, "Leveraging transcriptomics to understand rare genetic diseases of the human brain", Prof Siddharth Banka, Professor of Genomic Medicine and Rare Diseases, University of Manchester, "Mechanistic and clinical heterogeneity of single gene disorders illustrated by non-muscle actinopathies", Prof Paul Gissen, Professor of Paediatric Metabolic Diseases, GOSH and UCL, "Towards understanding a rare membrane trafficking disorder ARC", Prof Mariya Moosajee, Professor of Molecular Ophthalmology, Moorfields, UCL and the Francis Crick Institute, "Choroideremia - is it just a rare eye disease? Most of these people are children. 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. Workshops, Public meeting: FDA Rare Disease Day 2023, An official website of the United States government, : Translate technological capabilities into clinical applications, relevant to daily practice. 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. Youll have opportunities to learn quickly, advance your career, and to meaningfully impact our customers and our business. Volunteer. 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. Since 2011, NCATS and the NIH Clinical Center have sponsored Rare Disease Day at NIH as part of this global observance. Phone: 203-263-9938 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. 1779 Massachusetts Avenue WebRare Disease Day 2023. Phone: 202-588-5700. 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. 3RD INTERNATIONAL RARE DISEASES CONFERENCE 2023: Web8th International Conference on Rare Diseases and Orphan Drugs Osaka, Japan November 13-14, 2023 6th International Conference on Tropical and Infectious Diseases Bali, Indonesia December 07-08, 2023 6th Pathology and Infectious Disease Conference Prague, Czech Republic December 14-15, 2023 13th European Epidemiology and Public Join us for three days in Conferences, and 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 July 1, 2022Abstract submission website open. The event will be shared in multiple Facebook support groups for individuals specifically with PKU. WebRare Disease Day will be taking place on March 24, 2023 at 5:00 PM (ET). Learn more about DRDRI and NCATS' rare diseases research programs and access shareable resources to help raise awareness about rare diseases. 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. Thank you to all the folks at NORD for your remarkable efforts to make this such a success.. Over 830 enthusiastic attendees from across the globe convened to address and take action on the opportunities and challenges facing the rare disease community. As the gene therapy field continues to break records, there are still significant challenges to overcome relating to safety, efficacy, and accessibility. WORLDSymposiumwas pleased to announce the recipients of the 2023 New Treatment Award. We have kicked off 2023 with our continued support of Medics4RareDiseases (M4RD) during their annual symposium, and today, the emotive 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. Washington, DC 20036 International Conference Rare Diseases and its Treatment aims to bring together leading academic scientists, researchers and research scholars to exchange and share their experiences and research results on all aspects of Rare Diseases . This website uses cookies to improve your experience. Your meeting registration confirmation will include a link to generate a customized letter of invitation, which can be used when applying for a visa. Shine a spotlight on stories told by people living with a rare disease, their families and their communities. Join the webcast to watch the livestream on February 27 beginning at 9 a.m. (ET). Details of Biomarkers 2023 Conferences in Canada Biomarkers 2023 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. 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. 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). 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. 06885462, with its registered office at 1 Midland Road, London NW1 1AT. 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. Rare Diseases in the XXI Century Scientific Conference. Present and discuss your plans, activities and products. Congratulations to Christine Waggoner, the recipient of the WORLDSymposium 2023 Patient Advocate Leader (PAL) Award. This years theme is Intersections with Rare Diseases A patient focused event. Participants will have the unique opportunity to: Public Docket How do lay professionals deal with issues around gender and sexuality in the community? The World Orphan Drug Congress USA is a place where innovation and expertise is showcased, solutions are found and learning is done. 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. WORLDSymposiumwas pleased to announce the recipients of the 2023 Young Investigator Award. Summary 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. WebRare Disease Day will be taking place on March 24, 2023 at 5:00 PM (ET). Brain Injury Alliance of Prof Veronica Kinsler, Professor of Paediatric Dermatology and Dermatogenetics, Paul Nioi, Vice President, Discovery and Translational Research. In all, nearly 10% of the U.S. population have a rare disease. The .gov means its official.Federal government websites often end in .gov or .mil. WORLDSymposium is managed by GMI, Inc. and Saterdalen & Associates, LLC. 2023 RARE Patient Advocacy Summit. WebInternational Conference on Rare Diseases 2023. Hanson Wade's goal is to accelerate progress within organisations and across industries. 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. Sessions will include information from patients, physicians, and researchers regarding wAIHA clinical trials, current treatments, access to care, federal and state advocacy efforts, etc. This years conference will include presentations on next generation technology, long-read genome sequencing, patient empowerment and health equity, and more. Visit our exhibition on genome editing from 11 February 2023. WORLDSymposium receives NO FUNDING of any kind from the LDN, the National Institutes of Health (NIH), or any other federal agency. Phone: 617-249-7300, Danbury, CT office 1140062 and a company registered in England and Wales no. Highlight NIH-supported rare diseases research and the development of diagnostics and treatments. Changing lives of those with rare disease. 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. 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. Google Discussions will focus on The International Research Conference Aims and Objectives. November 15, 2022Notification of abstract acceptance for poster or platform presentation at WORLDSymposium 2023. 2018 Challenge Details, NCATS Rare Diseases Are Not Rare! Registration is required. Copyright 2023 Hanson Wade | Design and site by Event Engine| Hanson Wade Limited is registered in England & Wales, number 06752216. United States. Congratulations! , Continue reading "Skate Under the Stars: A Rare Disease Celebration". Stakeholders are invited to provide their perspectives on the discussion questions through the public docket. 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. Working together to build sustainable events, Multiple Myeloma Research Foundation (MMRF), anti-money laundering & financial crime policy. Join the webcast to watch the livestream on February 27 beginning at 9 a.m. (ET). 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. We use cookies to track usage and preferences. E:[email protected], Sheraton Boston Hotel Please note that NORD provides this information for the benefit of the rare disease community. Download the presentation, Magda CHLEBUS, Executive Director, Science Policy & Regulatory Affairs At EFPIA 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 Events will run over a span of time during the conference depending on the number and length of the presentations. Applications for the 2023 PhD programme are now open until 12:00 noon (GMT) on Wednesday 22 March 2023. Attendees should look forward to coming together to celebrate five years of JHH successes and to build bridges to , Continue reading "Building Bridges to the Future: Jamals Helping Hands Anniversary BBQ", The Rare Disease Innovation & Partnership Summit, being held March 21-23 in Philadelphia, brings together experts from across the rare disease community to unite in areas of unmet medical need, create life-transforming therapies and breakthroughs, drive therapeutic progress, propel commercial strategies and inspire impactful advocacy. Read full announcement here. Terrapinn is proud to be a member of isla. The. 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. Use the conference hashtag #CrickRareDiseases. 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. 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. Massachusetts Biotechnology Council 700 Technology Square, 5th Floor Cambridge, MA 02139 617.674.5100 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. WORLDSymposium and the Lysosomal Disease Network (LDN) are separate and independent entities and are not affiliated in any way. All are welcome to join the celebration to cheer on our skaters. Contribute to driving and directing the fast growing field of Health. Connect, exchange with clinicians and health policy makers.

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