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Abbreviation | NPF |
---|---|
Founded | March 14, 1967 [1] |
93-0571472 [2] | |
Legal status | 501(c)(3) non-profit organization |
Headquarters | Portland, Oregon [1] |
Colby Evans [3] | |
Randy Beranek [4] | |
Revenue (2015) | $9,859,476 [2] |
Expenses (2015) | $9,559,235 [2] |
Endowment | $5,562,686 [2] |
Employees (2014) | 70 [2] |
Volunteers (2014) | 6,705 [2] |
Website | www |
Formerly called | Psoriasis Society of Oregon, National Psoriasis Society [1] |
The National Psoriasis Foundation (NPF) is one of the world's largest nonprofit organization[ citation needed ] serving people with psoriasis and psoriatic arthritis. The NPF provides information and services to help people manage their condition while supporting research to find a cure. In addition to serving more than 3 million people annually through patient and professional health education and advocacy initiatives, the NPF has funded more than $10 million in psoriatic disease research grants and fellowships.
The National Psoriasis Foundation (NPF) focuses on improving the health of people with psoriasis and psoriatic arthritis. Through the organization's work to increase research, improve access to care, and expand knowledge of the psoriatic disease, the NPF aims to:[ citation needed ]
The NPF works to increase the number of dollars, scientists, and quality research projects devoted to psoriatic disease to find better treatments and a cure.
Each year, the NPF awards Discovery Grants and Translational Grants to support the start-up of new and innovative studies.
NPF Discovery Grants are one-year awards of up to $75,000 that fund researchers to explore preliminary ideas and conduct proof-of-concept experiments. The goal is to stimulate the development of new research programs in the field of psoriatic disease that are capable of competing for long-term funding from the National Institutes of Health or other agencies in the future. Funded research areas include, but are not limited to, genetics, cell biology, immunology, and epidemiology/health services. [5]
NPF Translational Grants' are two-year awards up to $200,000 total that is focused on moving scientific discoveries generated during laboratory or clinical research into projects that clearly benefit patients. In 2015, the National Psoriasis Foundation and the Arthritis National Research Foundation collaborated on a special Psoriatic Arthritis Research Grant. [6]
To address the shortage of clinicians with in-depth knowledge of the psoriatic disease, the National Psoriasis Foundation awards annual Medical Dermatology Fellowships. The fellowships, one-year awards up to $50,000, aim to increase the number of scientists focused on studying and treating psoriatic disease by encouraging young scientists to become physician researchers and dedicate their careers to psoriatic disease. [7]
The National Psoriasis Victor Henschel BioBank is a collection of biological samples and clinical information used by qualified scientists to advance the field of psoriasis genetics. It is one of the largest collections of psoriasis DNA samples in the United States. [8]
As the catalyst for psoriatic disease research, NPF is dedicated to promoting patient involvement in research studies and clinical trials. NPF offers research and clinical trial referral services that provide targeted outreach to people with psoriasis and psoriatic arthritis. [9]
The National Psoriasis Foundation focuses on changing policy to increase the federal government's attention on psoriatic disease, and to ensure that people get access to the treatments and medical specialists they need to best manage their condition.
Through the collective efforts of tens of thousands of advocates nationwide, NPF works to:
The National Psoriasis Foundation provides people with psoriasis and psoriatic arthritis and their healthcare providers the latest information, education, and critical support services so they can best manage their condition and improve overall health and well-being.
Free health webcasts from leading psoriatic disease experts arm people with information to reduce pain, inflammation, and itching; clear skin; loosen joints; better understand future treatment options; and decrease their risk for related conditions associated with psoriatic diseases like heart disease and diabetes. [11]
More than Skin Deep is a series of live patient-focused events held nationwide. This educational program provides people with the latest information from leading experts to best manage their condition. [12]
The NPF offers people who are newly diagnosed support from trained peer mentors with its Psoriasis One-to-One mentor program. Additionally, the organization has a health educator on staff who is available to answer questions about psoriasis, psoriatic arthritis, treatment options, and related topics.
The NPF also offers professional education for healthcare providers with CME events and other programs. [13]
Founded and headquartered in Portland, Oregon, the Psoriasis Foundation opened its second office in Alexandria, Virginia, in 2013. As of 2015, the organization has 10 Community Divisions in Chicago, Dallas/Fort Worth, Florida South, Florida West, Los Angeles, New York City, Northern California, Portland, San Diego, and Washington, D.C. These community divisions, led by a National Psoriasis Foundation community development manager and a group of volunteers, focus on fundraising, patient and health care provider outreach, grassroots advocacy and local education.
Team NPF is a group of everyday people with or without psoriatic disease who are walking, running, cycling, and DIY-ing for psoriasis and psoriatic arthritis cure. Team NPF Walks are held in communities around the country. In August 2015, the National Psoriasis Foundation hosted its inaugural Team NPF Cycle event. [14]
The National Psoriasis Foundation is a 501(c)(3) nonprofit organization.
In 2012, the organization received Charity Navigator's four-star rating, its highest rating, for its sound fiscal management and commitment to accountability and transparency. [15] The NPF receives funding and support from individuals affected by psoriatic disease and their families, friends, and medical providers. Corporations and foundations also fund the education, advocacy, and research programs that help people with psoriatic disease better manage their condition and improve their overall health.
Arthritis is a term often used to mean any disorder that affects joints. Symptoms generally include joint pain and stiffness. Other symptoms may include redness, warmth, swelling, and decreased range of motion of the affected joints. In some types of arthritis, other organs are also affected. Onset can be gradual or sudden.
Psoriasis is a long-lasting, noncontagious autoimmune disease characterized by patches of abnormal skin. These areas are red, pink, or purple, dry, itchy, and scaly. Psoriasis varies in severity from small localized patches to complete body coverage. Injury to the skin can trigger psoriatic skin changes at that spot, which is known as the Koebner phenomenon.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is one of the institutes and centers that make up the National Institutes of Health, an agency of the United States Department of Health and Human Services (HHS).
Psoriatic arthritis (PsA) is a long-term inflammatory arthritis that occurs in people affected by the autoimmune disease psoriasis. The classic feature of psoriatic arthritis is swelling of entire fingers and toes with a sausage-like appearance. This often happens in association with changes to the nails such as small depressions in the nail (pitting), thickening of the nails, and detachment of the nail from the nailbed. Skin changes consistent with psoriasis frequently occur before the onset of psoriatic arthritis but psoriatic arthritis can precede the rash in 15% of affected individuals. It is classified as a type of seronegative spondyloarthropathy.
The Children's Tumor Foundation (CTF) is a 501(c)(3) foundation dedicated to improving the health and well-being of individuals and families affected by NF, a group of genetic conditions known as neurofibromatosis or schwannomatosis. Their four-part mission includes propelling drug research and development through a series of strategic investments, strengthening patient support, increasing public awareness of NF and establishing best practices in clinical care for affected individuals. The Foundation is incorporated in all 50 states with active chapters and affiliates in 37 states. CTF is the largest private funder of all forms of NF research.
The Michael J. Fox Foundation for Parkinson's Research, founded in 2000 by Michael J. Fox, aims to find a cure for Parkinson's disease (PD). It concentrates on funding research and ensuring the development of improved therapies for people with Parkinson's.
Ustekinumab, sold under the brand name Stelara among others, is a monoclonal antibody medication developed by Janssen Pharmaceuticals, for the treatment of Crohn's disease, ulcerative colitis, plaque psoriasis and psoriatic arthritis, targeting both IL-12 and IL-23.
The Arthritis Foundation is a nonprofit organization addressing the needs of people living with arthritis in the United States.
The Lupus Foundation of America (LFA), founded in 1977, is a national voluntary health organization based in Washington, D.C., with a network of chapters, offices and support groups located in communities throughout the United States. The Foundation is devoted to solving the mystery of lupus. Its mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy.
The International Myeloma Foundation (IMF) is an American non-profit organization serving patients with myeloma, a cancer of plasma cells in the bone marrow. The IMF also provides support and information for family members, caregivers of myeloma patients, physicians and nurses. The organization is dedicated to improving the quality of life for all myeloma patients by focusing on four key areas: research, education, support, and advocacy.
Secukinumab, sold under the brand name Cosentyx among others, is a human IgG1κ monoclonal antibody used for the treatment of psoriasis, ankylosing spondylitis, and psoriatic arthritis. It binds to the protein interleukin (IL)-17A and is marketed by Novartis.
Ronald Jonathan Falk, MD, FACP, FASN is the Nan and Hugh Cullman Eminent Professor and Chair of the Department of Medicine at the University of North Carolina-Chapel Hill (UNC). He is a clinical nephrologist and internationally recognized expert in anti-neutrophil cytoplasmic autoantibody (ANCA)-induced vasculitis and autoimmune kidney disease. His career as a translational physician-scientist spans more than three decades. His clinical practice and translational research focus on characterizing the cell, tissue and physiologic changes in the development of specific autoimmune kidney diseases and developing new approaches for studying autoimmunity, inflammation and basic neutrophil/monocyte biology. He was Chief of the UNC Division of Nephrology and Hypertension from 1993-2015. He co-founded the UNC Kidney Center in 2005 and continues as Co-Director. Falk is a Past-President of the American Society of Nephrology (ASN). Since 2015, he has served as Chair of the Department of Medicine at UNC.
Apremilast, sold under the brand name Otezla among others, is a medication for the treatment of certain types of psoriasis and psoriatic arthritis. The drug acts as a selective inhibitor of the enzyme phosphodiesterase 4 (PDE4) and inhibits spontaneous production of TNF-alpha from human rheumatoid synovial cells. It is taken by mouth.
Louis Dubertret was born on 18 June 1943 in Douai, France. He had a distinctive career as an associate professor specializing in dermatology and cutaneous biology, is now a Professor Emeritus, and currently serves as the president of the René Touraine Foundation.
Guselkumab, sold under the brand name Tremfya, is a monoclonal antibody against interleukin-23 used for the treatment of plaque psoriasis.
Arthritis Australia is a charitable not-for-profit organisation advocating for people with arthritis and musculoskeletal conditions.
Risankizumab, sold under the brand name Skyrizi, is a humanized monoclonal antibody used for the treatment of plaque psoriasis, psoriatic arthritis, and Crohn's disease. It is designed to target interleukin 23A (IL-23A). It is given by subcutaneous injection.
The Parkinson's Foundation is a national organization that funds research and provides educational resources to Parkinson’s disease patients and caregivers. The Parkinson's Foundation was established in 2016 through the merger of the National Parkinson Foundation and the Parkinson's Disease Foundation. The Parkinson's Foundation has headquarters in Miami and New York City, in addition to 17 chapters throughout the United States.
Joel M. Gelfand is an American dermatologist and epidemiologist at the University of Pennsylvania in Philadelphia, Pennsylvania. He currently serves as the James J. Leyden Professor in Clinical Investigation, the Vice Chair of Clinical Research, the director of the Psoriasis and Phototherapy Treatment Center, and the medical director of the Clinical Studies Unit in the Department of Dermatology at the Perelman School of Medicine at the University of Pennsylvania. He studies systemic comorbidities of psoriasis and much of his research has centered on the connection between cardiovascular disease and psoriasis.