Accelerated Cure Project for Multiple Sclerosis is a national nonprofit organization dedicated to curing MS by determining its causes. This unique organization is driven by the philosophy that "curing means preventing the disability caused by MS, permanently stopping the progress of MS, and repairing the damage already caused in patients with MS."
The AKU Society aims to locate alkaptonuria (AKU) sufferers to offer them help and support, to raise awareness of AKU and to support research into its treatment. Its vision is to find a cure for AKU within the next decade. The AKU Society has established an influential multidisciplinary network, including representatives from numerous universities and hospitals, pharmaceutical companies and national AKU patient groups in Europe, the Middle East, Asia and North America. The society has also funded two research programs into AKU and the first AKU information center.
Cures Within Reach is dedicated to saving the lives of millions of people affected by both complex and rare conditions for which there are no effective treatments. We work to ensure that medical research changes patient lives for the better sooner rather than later by sourcing, validating, and stewarding medical research that repurposes available drugs, devices and treatments. Our ideas for potential research come from academic institutions, clinicians and sometimes patients themselves.
IAVA is the leading post-9/11 veteran empowerment organization ( VEO ) with the most diverse and rapidly growing membership in America. Connecting, uniting and empowering hundreds of thousands of veterans for the last decade through programs in education, employment, health and community, Time Magazine has deemed IAVA, "the most important organization representing the new generation of veterans."
The LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality-of-life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support and education for all those affected by the disease. LUNGevity moves forward firmly resolved to provide the energy, inspiration, and resources that are critical to making lung cancer a national priority. LUNGevity is a responsible steward of your donation, spending it to achieve our goal to Stop Lung Cancer Now.
The Multidisciplinary Association for Psychedelic Studies (MAPS) is a 501(c)(3) non-profit research and educational organization working to develop psychedelics and marijuana into prescription treatments for specific medical uses, and to educate the public honestly about their risks and benefits. Since its founding in 1986, MAPS has disbursed over $20 million for psychedelic therapy and medical marijuana research and education, all donated by individuals, businesses, and family foundations. MAPS' current top-priority project is obtaining Food and Drug Administration (FDA) approval for MDMA-assisted psychotherapy as a treatment for chronic, treatment-resistant post traumatic stress disorder (PTSD).
The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. The New England chapter serves those living in Massachusetts, New Hampshire, Vermont, and Rhode Island.
The National Psoriasis Foundation is the world's largest nonprofit organization serving people with psoriasis and psoriatic arthritis. Our mission is to find a cure for psoriasis and psoriatic arthritis and to eliminate their devastating effects through research, advocacy and education.
The Parkinson's Unity Walk (PUW), a grassroots organization, began in 1994 through the dedicated efforts of patients, families, support groups, and friends who were affected by Parkinson's disease. Their main goal is to raise awareness and funds for research to find a cure for Parkinson's.
The American College of Cardiology is a 49,000-member medical society that serves as the professional home for the entire cardiovascular care team. The mission of the College is to transform cardiovascular care and to improve heart health. The ACC leads in the formation of health policy, clinical standards and practice guidelines. The College operates national registries to measure and improve care. It also provides professional medical education, disseminates cardiovascular research and bestows credentials upon cardiovascular specialists who meet stringent qualifications. For more information, visit acc.org.
The Cluster Headache Support Group, Inc. is a 501(c)3 non-profit organization dedicated to improving the lives of those suffering with Trigeminal Autonomic Cephalgia and Migraine through Research, Education, Fact-based Information, and Compassionate Support. We provide practical, relevant information for the patient community and healthcare, help people learn to live with this debilitating disorder, and drive scientific research in collaboration with pharma and healthcare to find better treatment options that will help reduce their time to living pain free. Our ultimate objective is to find effective prevention and ultimately elimination of the debilitating impact of these disorders. Click here to follow The Cluster Headache Support Group on PatientsLikeMe.
Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon. What began as a grassroots movement in 2009, with just a few rare disease parent advocates and foundations, has since grown to over 500 global organizations.
For more than 40 years the Robert Wood Johnson Foundation has worked to improve the health and health care of all Americans. We are striving to build a national culture of health that will enable all Americans to live longer, healthier lives now and for generations to come.
The Schwartz Center for Compassionate Healthcare is a patient-founded nonprofit dedicated to nurturing patient and caregiver relationships to strengthen the human connection at the heart of healthcare. Research shows that when caregivers are compassionate, patients do better and are more satisfied, and caregivers find greater meaning in their work and experience less stress and burnout. We believe that a strong patient-caregiver relationship characterized by effective communication and emotional support, mutual trust and respect, and the involvement of patients and families in healthcare decisions is fundamental to high quality healthcare.
Wake Up Narcolepsy is a 501(c)(3) not-for-profit organization dedicated to supporting narcolepsy awareness and research to find a cure. WUN carries out its mission by:
- Providing funding to accelerate a cure for narcolepsy
- Increasing awareness of narcolepsy
- Decreasing time-lapse from symptom onset to proper diagnosis
- Providing supportive resources for people with narcolepsy and their families
Research & Academia
ALS is a tough disease. It calls for an organized aggressive approach. At the Duke ALS Clinic, we start by confirming the diagnosis and excluding ALS mimics. If ALS is confirmed we use the latest disease modifying therapies to slow progression. Our multi-disciplinary team identifies specific symptoms and problems and provides a wide range of options for dealing with them. We are always on the lookout for new therapies in our active research program. All of us here are enthusiastic and hopeful!
The Forbes Norris MDA/ALS Research Center has been at the forefront of neuromuscular disease research for over 25 years. The dedicated and experienced team of experts at the Forbes Norris Center coordinates their efforts between patient care in our clinic, research studies, and creating a multifaceted resource for patients with ALS. In collaboration with PatientsLikeMe, Neuropsychologist Dr. Susan Woolley-Levine was able to validate the development of a brief carer-rated questionnaire to evaluate cognitive change amongst patients with ALS.
King's College London is one of the top 25 universities in the world, the fourth oldest in England and is The Sunday Times 'University of the Year 2010/11'. A research-led university based in the heart of London, King's has nearly 23,500 students from around 140 countries. King's has an outstanding reputation for providing world-class teaching and cutting-edge research.
MotherToBaby, a service of the non-profit Organization of Teratology Information Specialists, provides FREE, confidential, evidence-based information to women and healthcare providers about exposures during pregnancy and breastfeeding, including prescription and over-the-counter medications, maternal medical conditions, vaccines and much more. Visit MotherToBaby.org to call, text, email or live chat with a counselor or to browse our library of fact sheets.
MotherToBaby also conducts research studies on the effects of maternal medical conditions, medications, and vaccines in pregnancy. Our studies involve only phone interviews; no needles, no medications, and no changes to your normal routine are required. Our goal is to better understand the safety of diseases and treatments during pregnancy, with the goal of improving pregnancy outcomes for women living with medical conditions.
The mission of the National Institute of Mental Health is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure.
For the Institute to continue fulfilling this vital public health mission, it must foster innovative thinking and ensure that a full array of novel scientific perspectives are used to further discovery in the evolving science of brain, behavior, and experience. In this way, breakthroughs in science can become breakthroughs for all people with mental illnesses.
The Northeast ALS Consortium (NEALS), is an independent, non-profit consortium of clinical and scientific investigators who conduct ALS research at their affiliated institutions. The mission of NEALS is to take advances in ALS research from the lab and translate them rapidly into new treatments for people with ALS.
The Oxford University MND Care & Research Centre, based at the John Radcliffe Hospital, provides multidisciplinary care for MND/ALS patients from across the Southern UK. The team has a broad portfolio of laboratory (genetics, cell biology) and clinical (MRI, biomarkers, epidemiology) research
Palo Alto University is a diverse and dynamic community dedicated to education with an emphasis in the behavioral and social sciences, to promoting future innovators and leaders for the benefit of society; to generating knowledge through research and scholarship of the highest level;and to providing services to the community informed by science and scholarship.
The ALS Clinic at Penn State Milton S. Hershey Medical Center is one of the leading research institutions in the field, particularly around issues of quality of life (QOL) for patients suffering from ALS. In collaboration with a research team lead by Dr. Zachary Simmons, PatientsLikeMe helped recruit more than 130 ALS patients to take part in a web-based survey of their healthcare experiences. In particular, we were able to help researchers contact hard-to-reach patients who don't normally attend a specialist ALS clinic, helping to increase the representativeness of their sample.
The Pew Internet & American Life Project is one of seven projects that make up the Pew Research Center, a nonpartisan, nonprofit "fact tank" that provides information on the issues, attitudes and trends shaping America and the world. The Project produces reports exploring the impact of the internet on families, communities, work and home, daily life, education, health care, and civic and political life.
The Packard Center for ALS Research at Johns Hopkins enables the world’s best ALS scientists to collaborate and access funding so that they may continue work to rapidly develop new treatments and find a cure for ALS, also known as Lou Gehrig’s disease. The hope is in the science.
The School of Library and Information Studies at the University of Wisconsin exists to educate professionals to bring together information in all its cultural forms and the people who need or want it, thereby contributing to individual and collective knowledge, productivity, and well-being. **Assistant Professor Catherine Arnott Smith, a medical informatics researcher specializing in medical vocabularies, analyzed the symptom descriptions generated by our patients and found that patient-generated symptom descriptions aligned closely with a number of professional medical vocabularies.**
The PATient-centered Involvement in Evaluating the effectiveNess of TreatmentS (PATIENTS) Program at the University of Maryland combines the expertise of leading researchers from the University of Maryland, Baltimore and the University of Maryland, College Park in partnerships with health care systems and patient communities and advocacy groups to improve health care research and outcomes. PATIENTS challenges the status quo by embracing and involving patients and health care systems continuously throughout the research process.
The University of Miami’s Brain Endowment Bank is a National Institutes of Health (NIH) NeuroBioBank. The Brain Bank supports medical and scientific researchers who study the human brain in search of better medications and treatments, prevention, and ultimately cures for brain disorders, including schizophrenia, depression, Alzheimer's and Parkinson's disease and traumatic brain injury. With the rapid advances in genetics and neuroscience, this information is helpful to the family and supports the health of the next generation.
The University of Michigan Psoriasis Genetics Laboratory is engaged in research on genetic predisposition to psoriasis, a skin disease that affects about 2% of the population. The laboratory has been collecting DNA samples and disease data from psoriasis patients and normal controls for over two decades, and has one of the largest collections of biological samples related to psoriasis genetics research in the world. Through a collaboration with PatientsLikeMe and other survey methods, the laboratory is currently involved in developing methods and biomarkers to predict the progression of psoriasis and psoriatic arthritis over time.
USF Health's mission is to envision and implement the future of health. It is the partnership of the USF Health Morsani College of Medicine, the College of Nursing, the College of Public Health, the College of Pharmacy, the School of Biomedical Sciences and the School of Physical Therapy and Rehabilitation Sciences; and the USF Physician’s Group. The University of South Florida is a Top 50 research university in total research expenditures among both public and private institutions nationwide, according to the National Science Foundation.
Acorda Therapeutics is a biotechnology company developing therapies for multiple sclerosis, spinal cord injury and related nervous system disorders. The Company's marketed products include AMPYRA® (dalfampridine) Extended Release Tablets, 10 mg, a potassium channel blocker approved as a treatment to improve walking in patients with multiple sclerosis (MS), this was demonstrated by an improvement in walking speed; and ZANAFLEX CAPSULES® (tizanidine hydrochloride), a short-acting drug for the management of spasticity. The Company's pipeline includes a number of products in development for the treatment, regeneration and repair of the spinal cord and brain.
Actelion Ltd. is a leading biopharmaceutical company focused on the discovery, development and commercialization of innovative drugs for diseases with significant unmet medical needs. Actelion is a leader in the field of pulmonary arterial hypertension (PAH). Its portfolio of PAH treatments covers the spectrum of disease, from WHO Functional Class (FC) II through to FC IV, with oral, inhaled and intravenous medications. Although not available in all countries, Actelion has treatments approved by health authorities for a number of specialist diseases including Type 1 Gaucher disease, Niemann-Pick type C disease, Digital Ulcers in patients suffering from systemic sclerosis, and mycosis fungoides in patients with cutaneous T-cell lymphoma
AstraZeneca is a global, innovation-driven biopharmaceutical business that focuses on the discovery, development and commercialization of prescription medicines, primarily for the treatment of cardiovascular, metabolic, respiratory, inflammation, autoimmune, oncology, infection and neuroscience diseases. AstraZeneca operates in over 100 countries and its innovative medicines are used by millions of patients worldwide.
Biogen uses cutting-edge science to discover, develop, manufacture and market therapies for serious diseases with a focus on neurology, immunology and hemophilia. Founded in 1978, Biogen is the world's oldest independent biotechnology company. Patients worldwide benefit from its leading multiple sclerosis therapies, and the company generates more than $4 billion in annual revenues.
The Boehringer Ingelheim group is one of the world’s 20 leading pharmaceutical companies. Headquartered in Ingelheim, Germany, it operates globally with 145 affiliates and more than 44,000 employees. Since it was founded in 1885, the family-owned company has been committed to researching, developing, manufacturing and marketing novel medications of high therapeutic value for human and veterinary medicine.
Bristol-Myers Squibb is a global biopharmaceutical company whose mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases. Their medicines help millions of people in their fight against such diseases as cancer, cardiovascular disease, diabetes, hepatitis B, HIV/AIDS, rheumatoid arthritis and psychiatric disorders.
Bupa is a leading international healthcare group. They run care homes, health centres, dental centres and hospitals, offer personal and company health insurance and provide home healthcare, workplace health services, health assessments and chronic disease management services including health coaching.
Cancer Treatment Centers of America, Inc. (CTCA) is a national network of five hospitals that specialize in the treatment of patients fighting complex or advanced-stage cancer. CTCA offers an integrative approach to cancer treatment that combines surgery, radiation, and chemotherapy with nutritional counseling, naturopathic medicine, mind-body therapy, and spiritual support to enhance quality of life and minimize side effects during treatment. The company serves patients from all 50 states at hospitals located in Atlanta, Chicago, Philadelphia, Phoenix and Tulsa. Known for delivering the Mother Standard® of care and Patient Empowerment Medicine®, CTCA provides patients with comprehensive information about their treatment options so they can participate in their treatment decisions.
Celgene Corporation, headquartered in Summit, New Jersey, is a patient-focused integrated global biopharmaceutical company engaged primarily in the discovery, development and commercialization of novel therapies for the treatment of cancer and inflammatory diseases through gene and protein regulation.
CoPatient helps organize the paperwork, identify savings opportunities and correct any billing issues. By bringing together a nationwide network of medical billing advocates that are ready to help, CoPatient will help patients make sure they're getting the best, most knowledgeable assistance possible. These advocates save patients money and also contribute intelligence to CoPatient's technology platform so that the next patient's case can be resolved even more effectively.
Curelator Headache enables individuals with migraine to discover their personal triggers, dismiss supposed triggers that are not associated with attacks, and identify factors that reduce the risk of having an attack (“protectors”). A novel and patented analytical approach leads people with migraine on a path of self-discovery. Understanding your personal triggers (environmental, physical, emotional etc) and how they may be acting in combination to provoke attacks is the first step to taking back control and managing your migraines. Curelator Headache and its curated list of most important triggers to track, was developed in conjunction with the world’s leading neurologists. Click here to follow Curelator Headache on PatientsLikeMe.
A leader in specialty care…..At EMD Serono, we recognized the potential of specialty pharmaceuticals and patient care long ago, and have been dedicated to delivering on their promise ever since. We have a legacy of both trying to find solutions to hard to treat conditions, as well as developing patient assistance programs that help ensure that those who need our therapies are able to access them. As one of the top five U.S. companies exclusively focused on specialty care, we see our innovation as a matter of balancing science with emotion – integrating our top minds in research and development with the insights from patients and health care practitioners confronting real- world concerns.
The goal of the FamilyWizeCommunity Service Partnership, Inc is to reduce the cost of prescription medicine for children, families and individuals by $1 billion by the end of 2015. We believe that stronger, healthier and happier people make healthier and better communities. FamilyWize delivers savings by distributing free drug prescription cards. These pharmacy savings cards are provided free of charge both to the organizations and agencies helping to distribute the drug cards and to the people who receive the cards. All funding for the FamilyWize prescription card program is provided by part of the dispensing fee that is included in the cost of medicines when a FamilyWize card is used to save you money. To see how much you could be saving on your medications, check out their drug look up tool.
inVentiv Health, Inc. is a global provider of clinical, commercial and consulting services to companies seeking to accelerate performance. inVentiv offers convergent services that deliver extraordinary outcomes to clients whose goal is improving human life. In 40 countries around the world, inVentiv’s [13,000] employees help clients rapidly transform promising ideas into commercial reality. inVentiv clients include more than 550 pharmaceutical, biotech and life sciences companies, as well as companies that now see health as part of their mission.
Janssen Pharmaceuticals, Inc. is dedicated to addressing and resolving the major unmet medical needs of our time. Driven by our commitment to patients, healthcare professionals, and caregivers, we strive to develop sustainable and integrated healthcare solutions by working in partnership with all stakeholders on the basis of trust and transparency. Our daily work is guided by meeting goals of excellence in quality, innovation, safety, and efficacy in order to advance patient care.
Today's Merck is a global healthcare leader working to help the world be well. Merck is known as MSD outside the United States and Canada. Through our prescription medicines, vaccines, biologic therapies, and consumer care and animal health products, we work with customers and operate in more than 140 countries to deliver innovative health solutions. We also demonstrate our commitment to increasing access to healthcare through far-reaching policies, programs and partnerships.
Empower. Encourage. Explore. Founded on these principles in October 2007, NurseTogether caters to the needs of the nursing community. Through content and applications, we offer encouragement for nurses and their unique lifestyle, empower nurses in their professional development and provide opportunities to explore their careers.
Patient Power is a one-of-a-kind resource bringing in-depth information to patients with cancer and chronic illness. Audio and video interviews, with transcripts, help patients make informed decisions in partnership with their medical team. Founded by patient-advocate, medical journalist, author and cancer survivor Andrew Schorr, Patient Power goes far beyond basic health information. More than 2,000 on-demand programs feature leading medical experts, inspiring patients, unforgettable stories and actionable medical guidance on serious health concerns.
Sanofi is a global integrated healthcare leader focused on patients' needs engaged in the research, development, manufacturing and marketing of innovative therapeutic solutions. Sanofi has core strengths in healthcare, with 7 growth platforms: diabetes solutions, human vaccines, innovative drugs, consumer healthcare, emerging markets, animal health and the new Genzyme.
Located in Osaka, Japan, Takeda is a research-based global company with its main focus on pharmaceuticals. As the largest pharmaceutical company in Japan and one of the global leaders of the industry, Takeda is committed to strive towards better health for people worldwide through leading innovation in medicine. Information about active and completed Takeda clinical trials is available through www.TakedaClinicalTrials.com.
UCB is a Brussels, Belgium-based global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system and of the central nervous system. With more than 8,500 people in approximately 40 countries, the company generated revenue of €3.4 billion in 2013. UCB is listed on Euronext Brussels (symbol: UCB).
Walgreens, the nation's largest drugstore chain, constitutes the Retail Pharmacy USA Division of Walgreens Boots Alliance, Inc. (Nasdaq: WBA), the first global pharmacy-led, health and wellbeing enterprise. More than 8 million customers interact with Walgreens each day in communities across America, using the most convenient, multichannel access to consumer goods and services and trusted, cost-effective pharmacy, health and wellness services and advice. Walgreens operates 8,229 drugstores with a presence in all 50 states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands. Walgreens digital business includes Walgreens.com, drugstore.com, Beauty.com, SkinStore.com and VisionDirect.com. Walgreens also manages more than 400 Healthcare Clinic and provider practice locations around the country.