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The Road to Diagnosis: Stories from Patients with Rare Diseases Personal stories from members of Inspire’s online support communities A Special Report from Inspire in recognition of Rare Disease Day 2011
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Document Date: 2015-05-19 12:25:16

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City

York / Mustang / Tarrytown / San Antonio / Dunnellon / Sunderland / Memphis / Cleveland / Windham / Maplewood / Milwaukee / Denver / Southside / Union City / Raleigh / Boston / New York / Lawrenceburg / Victoria / Sparta / Athens / Hughesville / Atlanta / Pleasantville / /

Company

Wilson / Google / /

Country

Switzerland / Netherlands / Australia / United Kingdom / United States / /

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Event

Labor Issues / /

Facility

Harvard Medical School library / University of Iowa / Fort Ashby / Mayo Clinic / /

IndustryTerm

online support groups / energy / telephone bill / online support communities / car accident / health insurance / /

MedicalCondition

Herpes Simplex Encephalitis / rare diseases / Primary progressive multiple sclerosis / Hereditary Leiomyomatosis / Fabry’s disease / genetic tumor syndrome / Tuberous sclerosis / Chuvash Polycythemia / brain tumors / asthma / Focal segmental glomerulosclerosis / Serpigenous choroiditis / Myofibrillar Myopathy / cancer / shortness of breath / Primary AL Amyloidosis / Scleromyxedema / Neurofibromatosis / diseases / depression / persistent dry cough / chest pain / lymphoma / pleurisy / Sarcoidosis / endometrial cancer / Tumor Necrosis Factor Receptor Periodic Syndrome / Leiomyosarcoma / cut in my neck / common diseases / leiomyosarcoma cancer / minimal change disease / Multiple autoimmune diseases / disease / Familial Amyloidosis Polyneuropathy / rare disease / Nephrotic Syndrome / pain / kidney tumors / Systemic scleroderma / Reflex Sympathetic Dystrophy / each disease / spinal tumors / Renal Cell Cancer / /

MedicalTreatment

lumpectomy / antibiotics / /

Organization

Inspire / National Organization for Rare Disorders / VHL Family Alliance / University of Iowa / U.S. National Cancer Institute / Harvard Medical School / NIH office of Rare Diseases Research / /

Person

Peter / Brian Loew / Beth / Jeanne / Twila Kelly / Cathy / Ingrid / Joyce Graff / Bette / Hudson / Clint / Valerie Allen / Artie / Melissa / Carson / Ella / Sally / Kathy / Wendy / Arlene / Dawn / Tracy / Inspire / /

Position

care physician / Executive Director / CEO / Major / genetic counselor / member of the Board of Directors / Director / nurse / lawyer / member / /

Product

ibuprofen / prednisone / /

ProvinceOrState

New York / Kansas / Wisconsin / Maryland / Victoria / Tennessee / Pennsylvania / Northampton / Iowa / /

Technology

x-ray / diagnostic tests / CAT / /

URL

www.inspire.com / http /

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