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Stakeholders Writing in Support of a Federal Open Access Policy

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Stakeholders Writing in Support of a Federal Open Access Policy Last Updated: June 24, 2020 Stakeholders Writing in Support of a Federal Open Access Policy O​rganizations representing ​millions of American taxpayers​, including patient and disease advocacy organizations, award-winning scientists and scholars, academic and research institutions, librarians, coalitions, graduate and professional students, and citizens have written in support of a ​federal open access policy that would require the results -- both articles and data -- of federally funded research be made publicly available immediately upon publication. These include: 73 national patient and disease advocacy organizations representing millions ​of patients, their caregivers, and their advocates. “​We live on the promise and inestimable value of publicly funded science. Obstacles to translating basic science into practice abound, but gated access is an artificial one. Remove barriers to information immediately; grant us public access to taxpayer-funded research without delay. We have a great deal of work to do, and we need the tools to do it, now.​“ ​Letter to President Trump, January 17, 2020 5p- Society AliveAndKickn Alstrom Syndrome International Angioma Alliance APBD Research Foundation APS Foundation of America, Inc. ARPKD/CHF Alliance Asthma and Allergy Foundation of America Batten Disease Support and Research Association Bridge the Gap – SYNGAP Education and Research Foundation Christopher & Dana Reeve Foundation CLOVES Syndrome Community Congenital Adrenal Hyperplasia Research Education and Support Foundation Concert Genetics Costello Syndrome Family Network CureSHANK Cure HHT Cutaneous Lymphoma Foundation CURED Nfp Cure Sanfilippo Foundation Dandy-Walker Alliance, Inc Dup15q Alliance Family Voices **Compiled by Heather Joseph (​[email protected]​) and Shawn Daugherty (​[email protected]​). Please reach out with any questions regarding this document. 1 FOD Family Support Group Foundation for Prader-Willi Research Genetic Alliance Glut1 Deficiency Foundation Hereditary Disease Circle HDYO Huntington's Disease Youth Organization Inflammatory Breast Cancer Research Foundation International Foundation for CDKL5 Research International Pemphigus & Pemphigoid Foundation John Thompson, PhD LunaPBC Lupus and Allied Diseases Association, Inc. Lymphangiomatosis & Gorham’s Disease Alliance M-CM Network MLD Foundation National Blood Clot Alliance National Neutropenia Network National Urea Cycle Disorders Foundation NBIA Disorders Association NGLY1.org Noah's Hope - Hope4Bridget Foundation No Stomach For Cancer RARE-X Ring14 USA Organic Acidemia Association Pathways for Rare and Orphan Studies Phelan-McDermid Syndrome Foundation Prader-Willi Syndrome Association (USA) PTEN World PXE International Queens Sickle Cell Advocacy Network Inc. (QSCAN) SADS Foundation Siegel Rare Neuroimmune Association Spastic Paraplegia Foundation SPAN Parent Advocacy Network Stickler Involved People Team Sanfilippo Foundation The Life Raft Group The Mastocytosis Society, Inc. The RUNX1 Research Program Sparrow Health System Turner Syndrome Society of the United States Usher 1F Collaborative Usher Syndrome Coalition Veterinary Information Network Wilson Disease Association Wishes for Elliott XXYY Project With over ​85 nonprofit funders having invested nearly $14 billion in biomedical research​ and training, the ​Health Research Alliance (HRA) is committed to maximizing the impact of biomedical research in order to improve human health. HRA submitted comments to the OTSP RFI and those comments can be found on ​pages 229-233​. 2 ● Alex’s Lemonade Stand ● ALS Association ● Alzheimer’s Association ● Alzheimer’s Drug Discovery Foundation ● American Association for Cancer Research ● American Brain Tumor Association ● American Cancer Society ● American Diabetes Association ● American Epilepsy Society ● American Heart Association ● American Lung Association ● American Society of Hematology ● American Urological Association ● Arnold and Mabel Beckman Foundation ● Arthritis Foundation ● Arthritis Research Foundation ● Conquer Cancer, the ASCO Foundation ● Autism Science Foundation ● Autism Speaks ● Barth Syndrome Foundation ● Bladder Cancer Advocacy Network ● Breast Cancer Research Foundation ● BrightFocus Foundation ● Burroughs Wellcome Fund ● Cancer Research Institute ● CancerFree Kids ● Children’s Tumor Foundation ● Crohn’s & Colitis Foundation ● Damon Runyon Cancer Research Foundation ● The Donaghue Foundation ● Doris Duke Charitable Foundation ● Flinn Foundation ● Focused Ultrasound Foundation ● Fondation Leducq ● Foundation Fighting Blindness ● Foundation for Physical Therapy Research ● The Gerber Foundation ● Glenn Foundation for Medical Research ● Foundation for Lung Cancer ● The Hope Foundation ● Hydrocephalus Association ● James S. McDonnell Foundation ● JDRF ● John Templeton Foundation ● The Kavli Foundation ● Kenneth Rainin Foundation ● The Klarman Family Foundation ● The Leona M. and Harry B. Helmsley Charitable Trust ● Leukemia & Lymphoma Society ● Lipedema Foundation ● Lung Cancer Initiative of North Carolina ● Lung Cancer Research Foundation ● Lungevity 3 ● Lupus Foundation of America ● Lupus Research Alliance ● Lymphoma Research Foundation ● The Mark Foundation for Cancer Research ● Health Resources in Action ● Melanoma Research Alliance ● Misophonia Research Fund ● Mt. Sinai Health Care Foundation ● National Psoriasis Foundation ● Neuroendocrine Tumor Research Foundation ● The New York Stem Cell Foundation Research Institute ● Ovarian Cancer Research Alliance ● Pancreatic Cancer Action Network ● Parkinson’s Foundation ● Patient-Centered Outcomes Research Institute ● Pershing Square Sohn Cancer Research Alliance ● The PEW Charitable Trusts ● PSI Foundation ● Rainwater Charitable Foundation ● Rheumatology Research Foundation ● Rita Allen Foundation ● Sarnoff Cardiovascular Research Foundation ● Simons Foundation ● Society for Immunotherapy of Cancer ● The Sontag Foundation ● St. Baldrick’s Foundation ● Susan G. Komen ● The V Foundation for Cancer Research ● Tourette Association of America ● Tuberous Sclerosis Alliance ● The Vallee Foundation ● Weston Brain Institute ● W.M. Keck Foundation Other societies and research organizations that submitted responses to the OSTP RFI include: ● National Center for Health Research (​pages 336-337​) ● Open Pharma (​pages 370-371​) ● Society for the Improvement of Psychological Science (SIPS) (​pages 429-433​) ● American Society of Human Genetics (​pages 449-450​) ● Aligning Science Across Parkinson’s (​pages 551-555​) ● Cholangiocarcinoma Foundation (​pages 733 - 736​) ● Think Computer Foundation (​page 784​) ● Rescuing Biomedical Research (​page 890​) Over 3,000 individual scientists, publishers, funders, patient advocates, librarians, and members of the public​. “​Opponents of taxpayer access would have you believe that a zero embargo policy would be a regulatory intrusion into the free market. But the truth is the exact opposite. These companies are afraid of going head to head with the far more efficient businesses that 4 already provide zero embargo taxpayer access, and are seeking protection from free market competition.​” ​Ongoing, public sign-on letter to President Trump Over​ 25,000 members of the Science Network, organized by Union of Concerned Scientists (UCS), a national nonprofit organization consisting of over 250 scientists and experts who work to use science to make the world a better place, submitted comments to the OSTP RFI which can be found on ​pages 856-860​. 21 Nobel Prize award-winning scientists “​Improving public health through the investigation of new treatments and potential cures for disease is delayed. Growing the U.S. economy through the translation of research into new services, tools and businesses is delayed. Progress across all of our fields is delayed by the embargo on access.​” ​Letter to President Trump, January 24, 2020 Randy Schekman - Physiology or Medicine, 2013 Peter Agre - Chemistry, 2003 George A. Akerlof - Economics, 2001 David Baltimore - Physiology or Medicine, 1975 Linda B. Buck - Physiology or Medicine, 2004 Elias J. Corey - Chemistry, 1990 Joseph L. Goldstein - Physiology or Medicine, 1985 Carol W. Greider - Physiology or Medicine, 2009 Louis J. Ignarro - Physiology or Medicine, 1998 Brian K. Kobilka - Chemistry, 2012 Roger D. Kornberg - Chemistry, 2006 Robert J. Lefkowitz - Chemistry, 2012 Craig C. Mello - Physiology or Medicine, 2006 H. David Politzer - Physics, 2004 Edward C. Prescott - Economics, 2004 Adam G. Riess - Physics, 2011 Sir Richard Roberts - Physiology or Medicine, 1993 George P. Smith - Chemistry, 2018 Harold E. Varmus - Physiology or Medicine, 1989 Jody Williams - Peace, 1997 Robert W. Wilson - Physics, 1978 17 research funders in the Open Research Funders Group (ORFG)​, a partnership of philanthropic organizations committed to the open sharing of research outputs, that collectively hold assets in excess of $100 billion and annually provide approximately $10 billion in funding. ● Alfred P. Sloan Foundation ● American Heart Association ● Arcadia (​pages 654-656​) ● Arnold Ventures (​pages 342-346​) ● Bill & Melinda Gates Foundation (​pages 697-702​) ● Eric & Wendy Schmidt Fund for Strategic Innovation ● Gordon and Betty Moore Foundation 5 ● Howard Hughes Medical Institute (​pages 23-26​) ● James S. McDonnell Foundation ● John Templeton Foundation ● The Leona M. and Harry B. Helmsley Charitable Trust ● Lumina Foundation ● Open Society Foundations ● Rita Allen Foundation ● Robert Wood Johnson Foundation ● Templeton World Charity Foundation
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