Speak Out and Take This Survey on Invisible Illnesses and Hidden Disabilities

Laura Brydges, B.A.Sc., M.A., and Jennifer Martin, PhD, Industrial/Organizational Psychology have put together a survey about invisible disabilities and have asked those involved with National Invisible Chronic Illness Awareness Week to be involved!

These women bring their personal experiences of having disabilities together with more than 30 years of research and health communication expertise. They began a group last year on Facebook called “Hidden Disability” and now have launched an invisible illness and hidden disability survey that asks some very important questions about disability. It is a secure and confidential English-language survey that will give adults everywhere their chance to share their opinions on some new disability issues.

The survey is the result of advocacy efforts of two women who both have disabilities. They have funded this research through garage sales, and are relying on word-of-mouth for this survey to reach as many people world-wide as possible. So please forward this message onto all of your contacts, friends and family, and ask them to take part too.

The survey should only take 15 to 20 minutes to do.

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Our Favorite Resources! Associations, Foundations, and More!

This is a list we put together with some of our favorite organizations. If you have one you would like added, leave a comment below and we will update the list soon.

(This collection of links is copyrighted. Please don’t copy and paste it to your web site.)

• Advocacy for Neuroacanthocytosis Patients http://www.naadvocacy.org/
• Advocacy for Patients with Chronic Illness, Inc http://www.advocacyforpatients.org/
• Agency for Healthcare Research and Quality www.ahrq.gov
• Alliance of State Pain Initiatives http://www.aspi.wisc.edu
• American Academy of Hospice and Palliative Medicine http://www.aahpm.org
• American Academy of Orthopaedic Surgeons http://www.aaos.org
• American Academy of Pain Management http://www.aapainmanage.org
• American Academy of Pain Medicine http://www.painmed.org
• American Arthritis Society http://www.americanarthritis.org
• American Autoimmune Related Diseases Association http://AARDA.org
• American Behcet’s Disease Association http://behcets.com
• American Cancer Society http://www.cancer.org/docroot/home/index.asp
• American Celiac Society http://www.williamshaffer.org/acs/about.htm
• American Chronic Pain Association http://www.theacpa.org
• American College of Physicians http://www.acofp.org
• American College of Rheumatology http://www.rheumatology.org
• American Diabetes Association http://www.diabetes.org
• American Fibromyalgia Syndrome Association http://www.afsafund.org
• American Geriatrics Society http://www.americangeriatricssociety.org
• American Headache Society http://americanheadachesociety.org
• American Lyme Disease Foundation http://www.aldf.com
• American Medical Association http://www.ama-assn.org
• American Osteopathic Association http://www.do-online.org
• American Pain Foundation http://www.painfoundation.org
• American Pain Society http://www.ampainsoc.org
• American Porphyria Foundation www.porphyriafoundation.com
• American Society of Anesthesiologists http://www.asahq.org
• American Society of Interventional Pain Physicians http://www.asipp.org
• American Society of Law, Medicine and Ethics http://www.aslme.org
• American Society of Physical Medicine and Rehabilitation http://www.aapmr.org
• American Society of Regional Pain Management http://www.asra.com
• Amputee Coalition of America http://www.amputee-coalition.org
• APS Foundation of America, Inc. http://www.apsfa.org
• Arthritis Foundation http://www.arthritis.org
• Association of Gastrointestinal Motility Disorders, Inc.http://www.agmd-gimotility.org/
• Association of Oncology Social Work http://www.aosw.org
• Autoimmune Information Network http://www.aininc.org
• BAMS http://www.bandagainstms.org
• Band Against MS-Clay Walker http://www.bandagainstms.org
• Band-Aids and Blackboards http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
• Beyond Chronic Pain http://www.beyondchronicpain.com
• Board Certified.com directory of those board certified physicians who wish to present an elevated Internet presence to the patient community http://Board Certified.com
• Bridge Medical http://mederrors.com
• But You Don’t Look Sick http://butyoudontlooksick.com
• Caring Bridge http://caringbridge.org
• C-Cange (cancer focus) http://www.c-changetogether.org
• CFIDs Association of American http://www.cfids.org/
• Celiac Sprue Association http://csaceliacs.org
• Centers for Disease Control and Preventionhttp://www.cdc.gov
• Center for Medical Consumers www.medicalconsumers.org
• Crohn’s and Colitis Foundation www.ccfa.org
• Chron’s Adventure http://CrohnsAdventures.org
• ChronicBabe http://chronicababe.com
• Citizens for Patient Safety http://citizensforpatientsafety.org/
• Compassionate Friends – coping with death of child http://compassionatefriends.org
• Conquering Chiari http://www.conquerchiari.org
• ConsumerLab http://ConsumerLab.com
• Consumer Health Information Corporationwww.consumer-health.com
• Consumers Advancing Patient Safety (CAPS) www.patientsafety.org
• Empowered Patient Coalition http://empoweredpatientcoalition.org
• Diabetic Mommy http://www.diabeticmommy.com
• DiagKNOWsis http://www.diagknowsis.org/
• Digestive Disease National Coalition http://www.ddnc.org
• Disabled American Veterans http://www.dav.org
• Dysautonomia Foundation http://www.familialdysautonomia.org
• Dysautonomia Information Network http://www.dinet.org
• Dystonia Medical Research Foundation http://www.dystonia-foundation.org
  
• Ehler-Danlos National Foundation (connective tissue disorder) http://www.ednf.org
• Ehlers Danlos/Hypermobility Syndrome http://teens.hypermobility.org
• Every Patient’s Advocate – Trisha Torrey http://healthcarespeaker.org/
• Facial Pain Association http://fpa-support.org
• Fibromyalgia http://www.fmaware.org
• For Grace http://www.forgrace.org – Reflex Sympathetic Dystrophy
• Healing Well http://healingwell.com
• Health & Disability Advocates http://hdadvocates.org
• Health Grades http://www.healthgrades.com
• Hereditary Neuropathy with liability to Pressure Palsies http://www.hnpp.org
• Hospice Patients Alliancehttp://hospicepatients.org
• Hospice Foundation of America http://www.hospicefoundation.org
• IDEAS Kids – Intestinal Diseases http://ideaskids.com
• IDF: Immune Deficiency Foundation, www.primaryimmune.org
• IG Living Magazine – Immune Gobulin http://www.igliving.com
• Institute for Safe Medication Practices http://www.ismp.org/
• Intracranial Hypertension Research Foundation http://www.ihrfoundation.org
• Intercultural Cancer Council http://www.iccnetowork.org
• International Association for Hospice and Palliative Care http://www.hospicecare.com
• International Association for the Study of Pain http://www.iasp-pain.org
• International Foundation for Functional Gastrointestinal Disorders (IBS) http://www.aboutibs.org
• International Stills Disease Foundation http://stillsdisease.org
• InvisABLE Illness http://www.invisableillness.com/
• Invisible Disabilities Association http://ida.org
• Joni and Friends http://joniandfriends.org
• Lance Armstrong Foundation http://www.livestrong.org
• Life Without Limbs http://lifewithoutlimbs.org
• Lung Cancer Alliance http://www.lungcanceralliance.org
• Lung Transplant Foundation http://lungtransplantfoundation.org
• Lupus Foundation of America, Inc. http://www.lupus.org
• Magic Foundation www.magicfoundation.org
• Maryland Pain Initiative http://www.marylandpaininitiative.org
• Mayo Clinoic http://www.mayoclinic.com
• Mastocytosis Society http://www.tmsforacure.org/
• Medically Induced Trauma Support Services (MITSS) www.mitss.org
• Medicarehttp://www.medicare.gov/
• Medline Plus Health Informationhttp://medlineplus.gov/
• Medscape http://www.medscape.com/home
• Medwatch – the FDA Safety Information and Adverse Event Reporting Program http://www.fda.gov/medwatch/index.html
• Mental Health Ministries www.MentalHealthMinistries.net.
• Myasthenia Gravis Foundation of America http://www.myasthenia.org
• Mastocytosis Society www.tmsforacure.org
• National Alliance for Mental Illness http://nami.org
• National Coalition for Cancer Survivorship http://www.canceradvocacy.org
• National Comprehensive Cancer Network http://www.nccn.org
• National Family Caregivers Association http://www.nfcacares.org
• National Fibromyalgia Association http://www.fmaware.org
• National Headache Association http://www.headaches.org
• National Hospice and Palliative Care Organization http://www.nhpco.org
• National Institutes of Allergy and Infectious Diseases (NIAID) http://www3.niaid.nih.gov/topics/lymeDisease
• National Institute of Arthritis and Metabolic Diseases (NIAMD) http://www.niams.nih.gov
• National Institutes of Health (NIH)http://health.nih.gov/
• National Invisible Chronic Illness Awareness Week http://InvisibleIllnessWeek.com
• National Kidney Foundation http://www.kidney.org
• National Multiple Sclerosis Society http://www.nationalmssociety.org
• National Necrotizing Fasciitis Foundation http://www.nnff.org
• National Organization for Rare Disorders http://www.rarediseases.org
• National Ovarian Cancer Coalition http://www.ovarian.org
• National Pain Foundation http://www.nationalpainfoundation.org
• National Patient Advocate Foundation http://www.npaf.org
• National Prostate Cancer Coalition http://www.fightprostatecancer.org
• National Stroke Association http://www.stroke.org
• National Vulvodynia Association http://www.nva.org
• National Women’s Health Resource Center http://www.healthywomen.org
• Pain.com-for professionals and patients http://www.pain.com
• PainPathways.org http://www.painpathways.org
• Pain Relief Network http://painreliefnetwork.org
• PAINWeek http://www.painweek.org/
• Pancreatic Cancer Action Network http://www.pancan.org
• Partners Against Pain http://www.partnersagainstpain.com
• Patient Advocate Foundation http://www.patientadvocate.org
• Patients Like Me http://patientslikeme.com
• Pharmacy Checker http://PharmacyChecker.com
• Power of Pain Foundation http://www.powerofpain.org
• Power Over Your Pain http://www.poweroveryourpain.com
• Prevent Cancer Council http://www.preventcancer.org
• PSC Partners Seeking a Cure http://www.pscpartners.org/
• QuackWatch http://www.quackwatch.org
• Race Against Pain http://www.RaceAgainstPain.com
• Reflex Sympathetic Dystrophy Syndrome Association http://www.rsds.org
• Rest Ministries Chronic Illness Pain Support http://restministries.com
• Saracoma Foundation of America http://www.curesarcoma.org
• Sceptor Pain Foundation http://www.sceptor.org
• Scleroderma Foundation http://www.scleroderma.org/
• Sickel Cell Disease http://www.sicklecelldisease.org
• Spondylitis Association of America http://www.spondylitis.org/
• Susan G. Komen for the Cure http://www.komen.org
• Texas Pain Society http://texaspain.org
• The Leukemia & Lymphoma Society http://www.leukemia-lymphoma.org
• The National Foundation for the Treatment of Pain http://www.paincare.org
• The National Migraine Association http://www.migranes.org
• The National Pain Foundation http://www.nationalpainfoundation.org
• The Prostate Net http://www.prostate-online.org
• United Spinal Association http://www.unitedspinal.org/
• United States Bone and Joint Decade http://www.usbjd.org
• Voice 4 Patients information and resources for those who have been victimized by healthcare error http://www.voice4patients.com/
• WEGO Health Activists http://community.wegohealth.com/
• Wilson’s Disease Association http://www.wilsonsdisease.org/
• World Institute of Pain http://www.worldinstituteofpain.org

INTERNATIONAL________________

• Asociacion Argentina para el Estudio del Dolor http://www.aaedolor.org.ar
• Associazione Italiana per lo Studio del Dolore http://www.aisd.it
• Australian Pain Society http://www.apsoc.org.au/interest.html
• British Pain Society http://www.britishpainsociety.org/
• Canadian Pain Society http://www.canadianpaincoalition.ca
• Egyptian Pain Society http://www.egyptianpainsociety.org
• European Federation of IASP Chapters http://www.efic.org
• Turkish Society of Algology http://www.algoloji.org.tr

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