Nonprofits

Accelerated Cure Project

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."

 

AKU Society

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

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.  Learn more about our work at www.cureswithinreach.org.

Fallon Health

Founded in 1977, Fallon Health is a leading health care services organization that supports the diverse and changing needs of those they serve. In addition to offering innovative health insurance solutions and a variety of Medicaid and Medicare products, Fallon excels in creating unique health care programs and services that provide coordinated, integrated care for seniors and individuals with complex health needs. Fallon has consistently ranked among the nation’s top health plans, and is the only health plan in Massachusetts to have been awarded “Excellent” Accreditation by the National Committee for Quality Assurance for its HMO, Medicare Advantage and Medicaid products.
 

LUNGevity Foundation

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.

Myelin Repair Foundation

The Myelin Repair Foundation (MRF) is the only non-profit medical research foundation solely focused on identifying myelin repair drug targets that will lead to treatments for multiple sclerosis.

National Kidney Foundation serving New England

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.

 

National MS Society, Central New England Chapter

For nearly 60 years, the Central New England Chapter has provided help for today, and hope for tomorrow to nearly 16,000 individuals and families affected by MS in Vermont, New Hampshire and Massachusetts.

National Psoriasis Foundation

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. 

One Mind

One Mind is dedicated to fostering fundamental changes that will radically accelerate the development and implementation of improved diagnostics, treatments, and cures for diseases and injuries of the brain; while eliminating the stigma and discrimination that persists.

Parkinson's Unity Walk

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. 

Pulmonary Fibrosis Advocates

The Mission of Pulmonary Fibrosis Advocates is to use carefully designed, creatively effective, and thoughtfully executed patient-centered advocacy to help speed the discovery and delivery of an effective treatment for pulmonary fibrosis.

The A.L.S. Family Charitable Foundation

The A.L.S. Family Charitable Foundation was started in 2001 in hopes of creating a brighter future for those living with A.L.S. in New England and honors all of the courageous individuals and families touched by this disease.

The Global Genes Project

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.

The National Niemann-Pick Disease Foundation

The National Niemann-Pick Disease Foundation supports and promotes research to find treatments and a cure for all types of Niemann-Pick Disease. The Foundation provides support services for individuals and families affected by NPD. Their vision is a world where Niemann-Pick Disease is no longer a threat to a full and productive life for patients and their families.
 

The Robert Wood Johnson Foundation

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. 

For more information, visit www.rwjf.org. Follow the Foundation on Twitter at www.rwjf.org/twitter or on Facebook at www.rwjf.org/facebook.

 

The Schwartz Center

The Schwartz Center for Compassionate Healthcare (www.theschwartzcenter.org) 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

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 Untangled

ALSUntangled helps patients with amyotrophic lateral sclerosis (ALS) to investigate alternative and off-label ALS treatments.

Forbes-Norris Pacific ALS Centre

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

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.

National Institute of Mental Health

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.

NEALS Northeast Amyotrophic Lateral Sclerosis Consortium

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.

Orion Bionetworks

Orion Bionetworks is a unique alliance dedicated to transforming the study of brain disorders and accelerating the discovery of new diagnostics, treatments and cures by combining the power of high-performance computing and information technologies with biomarkers & big data.

Oxford University MND Care & Research Centre

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

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.

Penn State Milton S. Hershey Medical Center

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

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 Robert Packard Center for ALS Research at Johns Hopkins

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 University of Wisconsin

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.**

University of Maryland

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.

University of Michigan Psoriasis Genetics Laboratory

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.

Industry

Abbott Labs

Abbott is a global, broad-based health care company devoted to the discovery, development, manufacture and marketing of pharmaceuticals and medical products, including nutritionals, devices and diagnostics. The company employs nearly 90,000 people and markets its products in more than 130 countries.

Acorda Therapeutics

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.

Avanir Pharmaceuticals

Avanir is a biopharmaceutical company focused on developing and commercializing novel therapies for central nervous system disorders with high unmet medical need.

Biogen Idec

Biogen Idec 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 Idec 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.

Boehringer Ingelheim

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

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

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 at Eastern Regional Medical Center

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

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

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.

Genentech

Founded more than 35 years ago, Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes medicines to treat patients with serious or life-threatening medical conditions. The company is a member of the Roche Group.

inVentiv Health

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

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.

Merck

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.

Novartis Pharmaceuticals Corporation

Novartis Pharmaceuticals Corporation wants to improve patients' lives by providing customers with innovative science and differentiated healthcare solutions delivered by diverse and engaged talent with integrity, passion and focus on performance.

NurseTogether

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

Patient Power (www.PatientPower.info) 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-Aventis

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.

UCB

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).

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