Patients for Biologics Safety & Access (PBSA) brings together a variety of patient advocacy groups with a common interest in ensuring that patients have access to safe and effective biologic medicines. This national group represents the voices of patient advocates of various disease states. Patients have benefited or will benefit from the introduction of biologic medicines and we want to ensure that patient safety and access is not compromised as biosimilars are introduced in the United States. Biosimilars are medicines that are highly similar, but not identical to biological medicines. As the FDA finalizes its standards for oversight and approval of biosimilar medicines, patient safety must be the top priority. The FDA should require biosimilars to prove they are as safe and effective as their reference innovative biologics.
Led by its membership, the group is coordinated by the Immune Deficiency Foundation (IDF), a patient advocacy organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research.
American Autoimmune Related Diseases Association (AARDA)
AARDA is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.
Arthritis Foundation (AF)
AF is the largest national nonprofit organization that supports the more than 100 types of arthritis and related conditions.
Committee of Ten Thousand (COTT)
COTT is a grass-roots, peer-led, education, advocacy and support organization for persons with HIV disease. For 23 years COTT has been an advocate for those with hemophilia HIV/AIDS and Hepatitis C.
Crohn’s & Colitis Foundation of American (CCFA)
The Crohn's and Colitis Foundation of America (CCFA) is a non-profit, volunteer-driven organization dedicated to finding the cures for the estimated 1.4 million Americans with Crohn's Disease and ulcerative colitis and to improve the quality of life of children and adults affected by these diseases.
Dystonia Medical Research Foundation (DMRF)
The mission of the DMRF is to advance research for more treatments and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families.
GBS / CIDP Foundation International
GBS/ CIDP Foundation International's vision is that every person afflicted with Guillain-Barré Syndrome, CIDP or variants has convenient access to early and accurate diagnosis, appropriate and affordable treatments, and dependable support services.
Hemophilia Federation of America (HFA)
HFA is a community based organization that assists and advocates for people with bleeding disorders and their families. HFA’s ongoing patient advocacy agenda includes product safety, as well as keeping treatment and care affordable and accessible for the community.
Hepatitis Foundation International (HFI)
HFI is a 501 (c) 3 non-profit organization established in 1994 working to eradicate chronic hepatitis for 500 million people globally. HFI is also dedicated to increasing and promoting health and wellness, as well as, reducing the incidence of preventable liver-related chronic diseases and lifestyles that negatively impact the liver.
Immune Deficiency Foundation (IDF)
IDF is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
International Foundation for Autoimmune & Autoinflammatory Arthritis
The International Foundation for Autoimmune & Autoinflammatory Arthritis is the only nonprofit that focuses only on the core diseases that are autoimmune and have a strong arthritic component, promoting patient-centered research, education, and awareness to patients, supporters, industry professionals, and practitioners around the world.
Jeffrey Modell Foundation
JMF is a global nonprofit organization dedicated to early diagnosis, meaningful treatments and, ultimately, cures through research, physician education, public awareness, advocacy, patient support and newborn screening.
Lupus and Allied Diseases Association (LADA)
LADA is a passion driven, all-volunteer non-profit organization dedicated to improving quality of life for those impacted by lupus and allied diseases and conditions of unmet need by fostering collaboration among stakeholders and promoting innovative advocacy, awareness and biomedical research program initiatives.
Lupus Foundation of America
The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus.
National Alliance on Mental Illness (NAMI)
NAMI is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. NAMI advocates for access to services, treatment, supports and research and is steadfast in its commitment to raise awareness and build a community for hope for all of those in need.
National Organization for Rare Disorders (NORD)
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
National Psoriasis Foundation (NPF)
NPF is a non-profit, voluntary health agency dedicated to finding a cure for psoriasis and psoriatic arthritis and eliminating their devastating effects through research, advocacy and education.
Platelet Disorder Support Association (PDSA)
PDSA is dedicated to enhancing the lives of people with immune thrombocytopenia (ITP) and other platelet disorders through education, advocacy, research and support.
Pulmonary Hypertension Association (PHA)
PHA works to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness.
RetireSafe is a grassroots organization that advocates and educates on behalf of America’s seniors on issues regarding Social Security, Medicare, health and financial well-being. RetireSafe expects its government to keep its promises, protect our nation, and maintain the safety and personal freedoms of its citizens.
The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends, formed January 1, 1998, by a merger between the West Coast-based United Scleroderma Foundation and the East Coast-based Scleroderma Federation.
Spondylitis Association of America
The Spondylitis Association of America is a national nonprofit organization, a leader in the quest to cure ankylosing spondylitis and related diseases, and empowers those affected to live life to the fullest.
United Spinal Association
United Spinal Association is dedicated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D), including veterans, and providing support and information to loved ones, care providers and professionals.
US Hereditary Angioedema Association (US HAEA)
US HAEA is committed to advancing and conducting clinical research designed to improve the lives of HAE patients and ultimately find a cure.
U.S. Pain Foundation
U.S. Pain Foundation is a non-profit organization dedicated to serving those who live with pain conditions and their care providers. Founded in 2006 by a fellow person with pain, it is the mission of the organization to connect, inform, empower and advocate for the pain community.