Medical Organizations and Websites
for Chronic Fatigue Syndrome, Fibromyalgia,
Orthostatic Intolerance, and Dysautonomia
Pediatric Websites and Organizations:
- The
Dysautonomia Youth Network of America, Inc. (previously the NDRF Youth
Network) offers information and a support network for children and young
adults impacted with OI/POTS/NCS and the various forms of dysautonomia. E-mail
info@dynakids.org for more
information.
- CFS in Youth Home Page, a project of The
CFIDS Association of America, provides several
hundred articles on pediatric chronic fatigue syndrome (CFS) and related
conditions, including essays by teens and parents, research updates, and tips
for studying and working with your school district.
- The
Young Person with CFIDS Parent/Teacher Bridge Builder -- Information about
accommodations, assistive technology, special education law, and more.
Includes a message board where
you can get support from other parents and educators
- Parents and Youth
Pages of the National ME/FM Action Network of Canada provides tips on managing
symptoms and coping at school
- Young Action Online
-- The personal website of Jane and Mark Colby, working in partnership with Tymes Trust. The Trust is
the longest running UK national organization supporting children and young people with
myalgic encephalomyelitis (ME), their families and professionals.
- CFS Insiders is a
youth-run website encouraging pediatric CFS advocacy and education efforts
- Association of Young People with ME provides
support to children and young adults with myalgic encephalomyelitis (ME) in the UK
- South Australian Youth with ME/CFS raises awareness,
and provides fun, information, and support
- For Parents of Sick and Worn-out Children is
a father's website about his family's experience with CFS, NMH, FM, and related conditions
- Teen Fibro Support offers coping tips
for youth, families and educators, and a discussion forum
Other Organizations and Websites:
- POTS Place is a website about
Postural Orthostatic Tachycardia Syndrome (POTS) with information on mechanisms,
causes, tests, myths, links, research and newsletters. It offers a "Meet Others"
program to connect POTS patients and caregivers with peers who live in their region.
- The Chronic Fatigue and Immune Dysfunction
Syndrome Association of America is working to improve the lives of those
with CFIDS through research, advocacy, and education for the general public and
medical professionals.
- Alison Hunter Memorial Foundation is an Australian
organization using research to improve medical care for those with ME/CFS
- The National ME/FM Action Network is a
Canadian organization working to help those with myalgic encephalomyelitis (ME) and
fibromyalgia (FM) through advocacy and education projects
- The Chronic Syndrome Support Associaion, Inc.
(CSSA) is an American non-profit organization focusing on public and medical
education about Chronic Immunological and Neurological Disorders (CIND), including
Fibromyalgia, Chronic Myofascial Pain, Chronic Fatigue Syndrome, Myalgic
Encephalomyelitis (ME), Gulf War Syndrome, Multiple Chemical Sensitivities Syndrome, and
Post Polio Syndrome.
- National Dysautonomia Research Foundation
- an information and support network that also generates research funding for
disorders of the autonomic nervous system
-
Syncope Trust and Reflex Anoxic Seizures
(STARS) - a UK-based charity providing information and support to those with syncope and
reflex anoxic seizures and their families
- American Association for Chronic Fatigue Syndrome -
a professional association of researchers and clinicians
- The National CFIDS Foundation is an American
organization that funds research, publishes a newsletter, and conducts advocacy
- National Fibromyalgia Partnership is an
American charity dedicated to FM awareness and education
- American Fibromyalgia Syndrome Association
is dedicated to research, education, and patient advocacy
- National Fibromyalgia Research Association is also
dedicated to research, education, and improved therapy for fibromyalgia
- The National Fibromyalgia Association
is an American charity seeking to improve the quality of life of people with FM through
increased awareness
- International Myopain Society -
a non-profit organization for research scientists, clinicians, and organizations
interested in exchanging ideas, conducting research, or learning more about
soft tissue pain syndromes like myofascial pain syndrome and fibromyalgia syndrome
- The American Pain Foundation
works to improve the quality of life of people with chronic pain using
advocacy, information, and research
Note: While this page is limited to medical
links, you will find additional links to disability organizations if you explore
the School, Transition Planning, Parenting, and Advocacy
Training sections of our website.
For help finding the information you need e-mail our webmaster.
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