The ALS Hope Foundation is an independent, non-profit organization in Philadelphia dedicated to the care and cure of people with ALS. The Foundation supports the MDA/ALS Center of Hope, a multidisciplinary clinic, at Temple University Hospital where people with ALS are not charged for their multidisciplinary care. The mission of the ALS Hope Foundation is to provide long-term support to: clinical centers of excellence for the care and treatment of people with ALS, basic and clinical research programs leading to a cure, support programs for people with ALS and their caregivers that optimize care and promote independence, and programs that promote education about diagnosis, treatment, and care.
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."
International Bipolar Foundation, formerly known as California Bipolar Foundation, was founded in June 2007 in San Diego, California by four parents with children affected by bipolar disorder. Well aware of the trauma that bipolar disorder causes for consumers and their families, these parents felt compelled to do something constructive to help. Their mission is to improve understanding and treatment of bipolar disorder through research; to promote care and support resources for individuals and caregivers; and to erase stigma through education. IBPF envisions wellness, dignity and respect for people living with bipolar disorder. All programs are free of charge and globally accessible.
For 40 years, Lupus Foundation of Northern California has been on a mission to improve lives impacted by lupus. Lupus Foundation of Northern California empowers lupus patients and their loved ones by providing programs and services that seek to break down geographic, cultural and economic barriers, by raising awareness of lupus among all communities, by advocating for the rights and best interests of those living with lupus, and by supporting research to make life without lupus a reality.
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 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 National Sleep Foundation (NSF) is dedicated to improving health and well-being through sleep education and advocacy. Founded in 1990 by the leaders in sleep medicine, NSF is the trusted resource for sleep science, healthy sleep habits, and sleep disorders to medical professionals, patients and the public.
The ALS Association Florida Chapter offers care and support to people living with ALS in Florida and funds research to find the cause and cure. They are part of a nationwide network of local ALS Association chapters with the same vision – a world without ALS. Through care, advocacy, research, education and support, they work to empower those with ALS to live fuller lives.
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.
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.
MyHealios combines evidence-based caregiver psychoeducation and skills training with the efficient use of technology to enhance the clinical experience and help families and patients on their path to recovery. MyHealios was founded in Switzerland in 2012 by caregivers of patients with mental illness. The company expanded in 2014 into the USA where there is a great need for high quality, accessible caregiver training and support. Over time, MyHealios has gained unique expertise in caregiver training and support while achieving great impact with local communities as well as treatment centers across the USA.
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
Aetna is one of the nation’s leading diversified health care benefits companies, serving an estimated 46.3 million people with information and resources to help them make better informed decisions about their health care. Aetna offers a broad range of traditional, voluntary and consumer-directed health insurance products and related services, including medical, pharmacy, dental, behavioral health, group life and disability plans, and medical management capabilities, Medicaid health care management services, workers’ compensation administrative services and health information technology products and services. Aetna’s customers include employer groups, individuals, college students, part-time and hourly workers, health plans, health care providers, governmental units, government-sponsored plans, labor groups and expatriates.
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.
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.
Healthy Business Group is a health improvement solution provider. HBG is dedicated to closing the gaps in the lack of health and wellness programs available to mid-market companies due to their size and budget. With a wide array and products and services, HBG provides employers with the tools and expertise they need guide employees' towards the path of a richer life.
Helsinn is a privately owned cancer supportive care pharmaceutical group with an extensive portfolio of marketed products and a broad development pipeline. Since 1976, Helsinn has been improving the everyday lives of patients, guided by core family values of respect, integrity and quality, through a unique integrated licensing business model working with long standing partners in pharmaceuticals, medical devices and nutritional supplement products. Helsinn is headquartered in Lugano, Switzerland, with operating subsidiaries in Ireland and the US, a representative office in China, as well as a product presence in about 90 countries globally.
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.
As global precision medical diagnostics company, Pathway Genomics’ testing services cover a variety of conditions including somatic and hereditary cancer, cardiac health, carrier screening, diet and weight loss, as well as drug response for specific medications including those used in pain management and mental health.The company’s CLIA and CAP accredited clinical laboratory provides physicians and their patients in more than 40 different countries with actionable and accurate healthcare information to improve or maintain health and wellness.
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.
Patients inspire us at Pfizer, and we have served patients, their caregivers and the healthcare profession since our founding in Brooklyn in 1849. Today, we at Pfizer apply science and our global resources to invent, develop and deliver therapies that extend and improve people’s lives around the world. We strive to set the standards for patient care, quality, safety and value in all the medicines and vaccines we provide, and work to challenge the most feared diseases of our time.
RallyPoint is the only online military community dedicated to helping service members and veterans achieve success in their lives and careers. Founded by former Special Forces officer Yinon Weiss and Army Captain Aaron Kletzing, it is the premier military network run by veterans in the USA.
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.
Takeda Pharmaceutical Company Limited is a global, research and development-driven pharmaceutical company committed to bringing better health and a brighter future to patients by translating science into life-changing medicines. Takeda focuses its R&D efforts on oncology, gastroenterology and central nervous system therapeutic areas plus vaccines. Takeda conducts R&D both internally and with partners to stay at the leading edge of innovation. New innovative products, especially in oncology and gastroenterology, as well as our presence in Emerging Markets, fuel the growth of Takeda. More than 30,000 Takeda employees are committed to improving quality of life for patients, working with our partners in health care in more than 70 countries.
Teva Pharmaceutical Industries Ltd. is a leading global pharmaceutical company that delivers high-quality, patient-centric healthcare solutions used by millions of patients every day. Headquartered in Israel, Teva is the world’s largest generic medicines producer, leveraging its portfolio of more than 1,800 molecules to produce a wide range of generic products in nearly every therapeutic area. In specialty medicines, Teva has a world-leading position in innovative treatments for disorders of the central nervous system, including pain, as well as a strong portfolio of respiratory products. Teva integrates its generics and specialty capabilities in its global research and development division to create new ways of addressing unmet patient needs by combining drug development capabilities with devices, services and technologies.
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.