Patient Resources
Note: IASP does not offer patient referrals.
American Chronic Pain Association
The mission of the ACPA is to facilitate peer support and education for
individuals with chronic pain and their families so that these
individuals may live more fully in spite of their pain, and to raise
awareness among the health care community, policy makers, and the public
at large about issues of living with chronic pain. www.theacpa.org
Arthritis Foundation
The Arthritis Foundation helps people take control of arthritis by
providing public health education, pursuing public policy and
legislation, and conducting evidence-based programs to improve the
quality of life for those living with arthritis. www.arthritis.org
Ehlers-Danlos National Foundation (EDNF)
Established in 1985 by Founder Nancy Hanna Rogowski, the Ehlers-Danlos
National Foundation creates resources for those affected by the
connective tissue disorder Ehlers-Danlos syndrome. www.ednf.org
Endometriosis New Zealand
Endometriosis New Zealand is New Zealand's national endometriosis
organisation and has affiliated support groups throughout the country.
They provide unique and professional services and programmes to reach
individuals, communities, schools, workplaces and all stakeholders
involved in improving health outcomes for those with endometriosis and
persistent pelvic pain. www.nzendo.co.nz
Fibrocentre.ca
Fibrocentre is committed to being Canada’s leading source for
reliable, up-to-date information on fibromyalgia. People living with
fibromyalgia, as well as their families and friends, can come to access
useful tools and expert resources to help them understand and manage the
many symptoms associated with this chronic pain condition. www.fibrocentre.ca
Interstitial Cystitis Association
The Interstitial Cystitis Association (ICA) is committed to finding more
effective treatments and a cure for interstitial cystitis. The ICA
promotes and funds research, educates the medical community and public,
advocates for IC patients, healthcare providers and researchers, and
offers support for IC patients and their families. www.ichelp.org
The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society (LLS) is the world's largest
voluntary health organization dedicated to funding blood cancer
research, education and patient services. LLS's mission: Cure leukemia,
lymphoma, Hodgkin's disease and myeloma, and improve the quality of life
of patients and their families. www.leukemia-lymphoma.org
National Fibromyalgia Association
The National Fibromyalgia Association is a 501(c) 3 nonprofit
organization whose mission is to develop and execute programs dedicated
to improving the quality of life for people with fibromyalgia. www.fmaware.org
National Organization for Rare Disorders
NORD is committed to the identification, treatment, and cure of rare
disorders through programs of education, advocacy, research, and
service. It is a non-profit, voluntary health agency that exists to
serve rare-disease patients and their families. www.rarediseases.org
Pain Connection-Chronic Pain Outreach Center Pain Connection-Chronic Pain Outreach Center, Inc. is a
not-for-profit human service agency whose mission is to empower people
with chronic pain to improve their quality of life, decrease their sense
of isolation and take a more active role in their treatment. www.painconnection.org/
Partners Against Pain
Developed by Purdue Pharma, Partners Against Pain is an advocacy website
which offers numerous resources for patients and caregivers, including
pain assessment and tracking tools. There are also resources available
for healthcare professionals. www.partnersagainstpain.com
Patient Advocate Foundation
The Patient Advocate Foundation aims to provide effective mediation and
arbitration services to patients to remove obstacles to healthcare
including medical debt crisis, insurance access issues and employment
issues for patients with chronic, debilitating and life-threatening
illnesses. www.patientadvocate.org
Patient Alliance for Neuroendocrineimmune Disorders
Organization for Research and Advocacy
P.A.N.D.O.R.A. aims to assist patients with Neuroendocrineimmune
Disorders, such as Chronica Fatigue Syndrome and Fibromyalgia, and their
families in leading productive and fulfilling lives. www.pandoranet.info
Reflex Sympathetic Dystrophy Syndrome Association
The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) was
founded in 1984 to promote public and professional awareness of Complex
Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic
Dystrophy (RSD). www.rsds.org
Sickle Cell Disease Association of America
The SCDAA mission is to advocate for and enhance our membership's
ability to improve the quality of health, life and services for
individuals, families and communities affected by sickle cell disease
and related conditions, while promoting the search for a cure for all
people in the world with sickle cell disease. www.sicklecelldisease.org
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