Participating Health Organizations
PatientINFORM is a collaborative effort by trusted and experienced patient health organizations, medical societies, health information professionals, and scholarly and medical publishers. The participating voluntary health organizations create online material to help patients or their caregivers more fully understand the implications of research and provide links to the full text of research articles they’ve selected from participating journals. The publishers allow readers following links from patientINFORM material on the health organizations’ sites to access the full text of these articles without a subscription, and they provide patients and caregivers with free or reduced-fee access to other articles in participating journals.
The American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives and diminishing suffering from cancer, through research, education, advocacy and service.
In the ACS News Center, you can find news items about cancer research. Within a news item that refers to a research article published in a journal participating in patientINFORM, you’ll see a patientINFORM logo. At the bottom of the news item, there will be a smaller patientINFORM logo next to each article citation that contains a link to the original research article.
The American Diabetes Association (ADA) is the nation's leading nonprofit health organization providing diabetes research, information and advocacy. The mission of the Association is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. To fulfill this mission, the ADA funds research, publishes scientific findings, provides information and other services to people with diabetes, their families, health professionals and the public. The Association is also actively involved in advocating for scientific research and for the rights of people with diabetes.
In the Access: Diabetes Research section of ADA’s web site, you can find summaries, or digests, of recent research related to diabetes and related conditions that has been published in participating journals. The article citation at the top of each digest contains a link to the original research article.
Since 1924 the American Heart Association has helped protect people of all ages and ethnicities from the ravages of heart disease and stroke. These diseases, the nation's No. 1 and No. 3 killers, claim more than 930,000 American lives a year. The Association invests in research, professional and public education, advocacy and community service programs so people across America can live stronger, longer lives.
The Epilepsy Foundation, a national non-profit with 48 affiliated organizations throughout the United States, has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is to stop seizures and sudden unexpected death in epilepsy (SUDEP), find a cure, and overcome the challenges created by epilepsy through efforts including education, advocacy, and research to accelerate ideas into therapies. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit www.epilepsy.com.
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.
EURORDIS represents more than 469 rare disease organisations in 45 different countries (of which 25 are EU Member States), covering more than 4,000 rare diseases.
The Fibrolamellar Registry is a 501(c)3 non-profit organization run by a community of patients with a rare liver cancer called fibrolamellar hepatocellular carcinoma and their family members. We are dedicated to serving our community’s needs through our website, fibroregistry.com. The site serves four main purposes: (1) Providing information about the science of fibrolamellar; (2) Creating a fibrolamellar health survey database; (3) Linking the fibrolamellar patients’ health survey data with their physical tissue samples; (4) Providing a private online forum for patients, family members, and caregivers.
The Jain Foundation (JF) is a non-profit foundation whose mission is to cure a rare form of muscular dystrophy called dysferlinopathy, which includes the clinical presentations Limb-girdle muscular dystrophy type 2B (LGMD2B) and Miyoshi muscular dystrophy 1 (MMD1). The Foundation's focused strategy includes funding and actively monitoring the progress of scientific research projects in key pathways towards a cure, providing financial and logistical support to promising drug candidates to accelerate them to clinical trials, funding clinical trials and studies, encouraging collaboration among scientists, and educating LGMD2B/Miyoshi patients about their disease and helping them with their diagnosis (e.g., funding dysferlin protein and gene mutational analysis).
In the Learning Center section on the JF website, you can learn more about the disease and read summaries of research studies related to dysferlinopathy. When a summary includes the patientINFORM logo, you can click on the link to read the full-text article through their partnership with top research journals.
The Lupus Foundation of America, Inc. (LFA) is the foremost national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus. The LFA energetically pursues its mission through five program objectives: provides direct financial support to researchers; dvocates for increased public and private sector support for research on lupus; translates research findings into medically sound information and programs for people with lupus, their families, physicians and other health professionals; heightens public awareness of the impact of lupus; and supports individuals with lupus, their families and caregivers.
LFA Research Summaries provide information about research into lupus and related disorders. When a summary refers to an article from a journal that participates in patientINFORM, it will include a link to the original research article.
The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle disease. We are dedicated to improving the lives of all babies, children and adults affected by any one of sixty different neuromuscular conditions.
Our work has four main focuses:
- we fund world-class research to find effective treatments and cures
- we provide free practical and emotional support for individuals and families and specialist training and development for families and health professionals
- we campaign to raise awareness and bring about change
- we award grants towards the cost of specialist equipment, such as powered wheelchairs
The Research News section of the Muscular Dystrophy Campaign website contains summaries of the latest neuromuscular advances in a language and format that is accessible to patients and families. News items that refer to a research article published in a participating journal, will contain a patientINFORM logo and a link to the original research article.
Since 1991, the National Breast Cancer Coalition (NBCC)’s trained advocates have lobbied at the national, state and local levels for public policies that impact breast cancer research, diagnosis and treatment. Its grassroots advocacy effort has hundreds of member organizations and tens of thousands of individual members working toward increased federal funding for breast cancer research and collaborating with the scientific community to implement new models of research, improving access to high-quality health care and breast cancer clinical trials for all women, and expanding the influence of breast cancer advocates in all aspects of the breast cancer decision making process. NBCC also helps guide the public through the maze of information on breast cancer.
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service.
Orphanet is the free reference portal that gathers information on rare diseases and orphan drugs. Its aim is to provide the community at large with a comprehensive set of information on rare diseases and orphan drugs in order to contribute to the improvement of the diagnosis, care and treatment of patients with rare diseases, and to provide information about developments in research and new therapies. Created in 1997, Orphanet is currently represented in 38 countries and the website is available in six languages (English, French, Spanish, German, Italian and Portuguese). Orphanet is coordinated in France by a unit of the French Institute of Health and Medical Research (Inserm).
The Solve ME/CFS Initiative (SMCI) – formerly known as the CFIDS Association of America - was founded in 1987 and has established itself as the leading charitable organization dedicated to myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) – also known as chronic fatigue and immune dysfunction syndrome (CFIDS).
Our mission is to make ME/CFS widely understood, diagnosable, and treatable. We do this by stimulating participatory, patient centered research aimed at the early detection, objective diagnosis and effective treatment of ME/CFS through expanded public, private and commercial investment. SMCI is working every day to change the future for people with ME/CFS. Putting research first, we will end the life-altering disability, stigma and isolation ME/CFS causes. Through our Research Institute Without Walls, we will turn science into treatment for ME/CFS.
At SolveCFS.org, you'll find summaries of research findings and analysis of key studies. The patientINFORM logo identifies full-text articles you can read through their partnership with many of the top scientific journals.
Special Needs Jungle is a parent-led website and blog offering news, information, resources, and informed opinions about children's special educational needs and disability, physical and mental health, including long-term conditions and rare diseases. Special Needs Jungle helps parents find the information they need to advocate for their families when navigating the jungle of health, education, and social care services. Special Needs Jungle is a member of Genetic Alliance UK.
The TMJ Association (TMJA) is a national nonprofit health advocacy organization whose mission is to improve the quality of health care and lives of everyone affected by Temporomandibular Disorders (TMD). Temporomandibular Disorders are a complex and poorly understood set of conditions characterized by pain in the jaw joint and surrounding tissues and limitations in jaw movement. Approximately 12% of the population or 35 million people in the United States are affected by TMD at any given time. Scientists have found that most patients with TMD also experience painful conditions in other parts of the body. These comorbid conditions include chronic fatigue syndrome, chronic migraine and tension-type headache, chronic low back pain, endometriosis, fibromyalgia, interstitial cystitis, irritable bowel syndrome, and vulvodynia. These findings are stimulating research into common mechanisms underlying all of these comorbid conditions. In response, The TMJA co-founded the Chronic Pain Research Alliance (CPRA) which is now an initiative of The TMJ Association. The CPRA is the country’s first and only research-led collaborative advocacy effort dedicated to changing the lives of those with chronic overlapping pain conditions. At www.tmj.org and www.ChronicPainResearch.org you’ll find the latest scientific research on TMD and chronic overlapping pain conditions.
The Tuberous Sclerosis Alliance (TS Alliance) is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. TSC is a rare genetic disease that causes tumors to form in various vital organs, including the brain, heart, kidneys, eyes, liver, and lungs. It is also the leading genetic cause of both autism and epilepsy.
Supporting anyone and everyone affected by TSC is a major focus of the TS Alliance, and information is one of the most powerful and significant ways the TS Alliance empowers those we serve. To ensure a future where no one has to endure the devastating effects of TSC, the TS Alliance is committed to making sure research continues to move forward. Through several different programs, the TS Alliance supports basic, translational, and clinical research. Also, the TS Alliance, our partners and a network of grassroots volunteers have worked tirelessly to create a vibrant government advocacy program with the goal of making sure the Federal government continues to focus time, energy, and dollars on TSC research.
The International Association of Scientific, Technical and Medical Publishers (STM) is a broad and welcoming organization, which includes large and small companies, not for profit organizations and learned societies, traditional primary and secondary publishers, and new players. Members have the opportunity to participate in a body central to the well being of the industry. The mission of STM is to create a platform for exchanging ideas and information and to represent the interest of the STM publishing community in the fields of copyright, technology developments and end user / library relations.
Members of the Professional/Scholarly Publishing (PSP) Division of the Association of American Publishers publish, in print and electronic form, the vast majority of materials produced and used by scholars and professionals in science, medicine, technology, business, law and the humanities. Division members produce books, journals, computer software, databases and CD-ROM. The nature of the products PSP members produce makes all developments affecting electronic publishing and the National Information Infrastructure of particular interest to the division.
Other Participating Organizations
The Welch Medical Library was founded in 1929 through a merger of libraries throughout the Johns Hopkins Medical Institutions. Over its 75-year history, the Welch Library and its directors have played a leadership role in the management and delivery of health sciences information, with a particular focus on the development of innovative applications of new technologies. In addition to providing access to the published literature, print and electronic, and numerous scientific databases, the Welch Library offers educational and liaison programs to assist faculty, staff and students throughout the Johns Hopkins Medical Institutions in using information resources to access critical scientific information and to analyze and communicate their research findings. It has recently received funding for several patient information initiatives. The library collection includes over 400,000 print volumes, as well as more than 3,000 electronic journal titles. The Johns Hopkins University Libraries Catalog provides a shared catalog system throughout Johns Hopkins.
CrossRef is an independent membership association, founded and directed by publishers. CrossRef's mandate is to connect users to primary research content by enabling publishers to do collectively what they can't do individually. CrossRef is also the official DOI registration agency for scholarly and professional publications. It operates a cross-publisher citation linking system that allows a researcher to click on a reference citation on one publisher's platform and link directly to the cited content on another publisher's platform, subject to the target publisher's access control practices. Our citation-linking network today covers millions of articles and other content items from several hundred scholarly and professional publishers.
HighWire Press, a division of the Stanford University Libraries, hosts the online versions of nearly 900 high-impact, peer reviewed journals and other scholarly content. HighWire is the world's the largest repository of free, full-text, peer-reviewed content, with nearly one million free articles online. With its partner publishers HighWire produces 73 of the 200 most-frequently-cited journals.
HighWire Press was founded by Stanford in 1995 with a mission of ensuring that its partners — scientific societies and responsible publishers — would remain strong and able to lead the transition to the newest technologies for scientific communication.
The online sites that HighWire hosts reach more than 17 million users per month, who download about 56 million articles per month, resulting in 1,500,000,000 "hits" to the HighWire-hosted publisher web sites.