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EDUCATIONAL PAGES (NON-PROFITS AND DRS)

Social Media Pages

Click on the condition below to be brought to a list of Instagram, Blogs, and Youtube channels you can follow. Unfortunately, due to the rarity of many of these conditions, it is difficult to find patients sharing their experiences.

We do not endorse these social media pages, nor affiliate with them.

CHRONIC ILLNESS AND DISABILITY
EHLERS-DANLOS SYNDROME AND HYPERMOBILITY
POTS AND DYSAUTONOMIA
MAST CELL RELATED DISORDERS
GASTROPARESIS
MEDIAN ARCUATE LIGAMENT SYNDROME
CSF LEAKS
CHIARI MALFORMATION AND CCI

CHRONIC ILLNESS AND DISABILITY

YOUTUBE

INSTAGRAM

CHRONIC CARE
CLAIRE WINELAND
DISABILITY HORIZONS
SCOPE
SITTING PRETTY LOLO
SPECIAL BOOKS BY SPECIAL KIDS

PODCASTS

CHRONIC BUT ICONIC
INVISIBLE NOT BROKEN
NO END IN SIGHT
UNINVISIBLE
AMPLIFY BIPOC DISABLED VOICES
CHRONIC CARE
THE CHRONIC DIARY
CHRONIC ILLNESS HUMOR
CRUTCHES AND SPICE
DISABLED ELIZA
DISABILITY CONNECT
DISABILITY TOGETHER
HOW.U.FEELING
INVISIBLE DISABILITEA
MISSION DIAGNOSIS
ONLINE ROOM SCHOOLHOUSE
YOU LOOK OKAY TO ME
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EHLERS-DANLOS SYNDROME AND HYPERMOBILITY

YOUTUBE

INSTAGRAM

CHRONIC CARE
GEORGINA'S JOURNEY
HOSPITAL PRINCESS
IZZY KORNBLAU
LIFE WITH STRIPES

BLOGS AND RESOURCES

LILIAN HOLME
OH TWIST
NAUGHTY LITTLE MAST CELLS
THROUGH THE FIBRO FOG
THE TRANSLUCENT ONE (VEDS)
OUR INSTAGRAM
CENTER FOR COMPLEX NEUROLOGY
CHRONIC CARE
CHRONICALLY JENNI
CORT DOES SCIENCE
EHLERS DANLOS MEMES
EHLERS DANLOS SOCIETY
EHLERS DANLOS SYNDROME (FACTS)
EDS TODAY
HYPERMOBILITY DOCTOR
HYPERMOBILITY HEALTH COACH
HYPERMOBILITY MD
INVISIBLE DISABILITEA
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POTS AND DYSAUTONOMIA

YOUTUBE

INSTAGRAM

AIMEE ESTHER
CARING MEDICAL
CHRONIC CARE
CHRONICALLY JENNI
DYSAUTNOMIA INTERNATIONAL
GEORGINA'S JOURNEY
IZZ Y KORNBLAU
LINDSAY MURRAY

BLOGS AND RESOURCES

BETTER BY THE BEAT
NAUGHTY LITTLE MAST CELLS
OH TWIST
THROUGH THE FIBRO FOG
OUR INSTAGRAM
CENTER FOR COMPLEX NEUROLOGY
CHRONIC CARE
DOG AUTONOMIA
DR RITA WHITE
DYSAUTONOMIA DOCTORS
DYSAUTONOMIA INTERNATIONAL
DYSAUTONOMIA LIFE
INVISIBLE DISABILITEA
MISSION DIAGNOSIS
POTS WELLNESS
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MAST CELL RELATED DISORDERS

YOUTUBE

CHRONIC CARE
HEALING HISTAMINE
HOSPITAL PRINCESS

BLOGS AND RESOURCES

INSTAGRAM

OUR INSTAGRAM
CHRONIC CARE
HAPPY WITHOUT HISTAMINE
HELLS, BELLS, AND MAST CELLS
NAUGHTY LITTLE MAST CELLS
OH TWIST
HOSPITAL PRINCESS
THROUGH THE FIBRO FOG
LOW HISTAMINE KITCHEN
MARATHONS FOR MAST CELL
MAST CELLS UNITED
MISSION DIAGNOSIS
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GASTROPARESIS

YOUTUBE

INSTAGRAM

CHRONIC CARE
IZZY KORNBLAU
LINDSAY MURRAY

BLOGS AND RESOURCES

HOSPITAL PRINCESS
OUR INSTAGRAM
CHRONIC CARE
CRAZY CRIPPLE COUPLE
GASTROPARESIS FOOD
LIVING WITH GASTROPARESIS
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MEDIAN ARCUATE LIGAMENT SYNDROME

YOUTUBE

INSTAGRAM

CHRONIC CARE
KATIE AGAIN
LAURIE KRAUSE
THE RAW LIFE

BLOGS AND RESOURCES

MALS JOURNEY
OUR INSTAGRAM
CHRONICALLY COLETTE
LIFE OF HANNAH
MALS AWARENESS
MEG AND HER FOOD
S BROAT CARDON
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CSF LEAKS

YOUTUBE

INSTAGRAM

CARING MEDICAL
CHRONIC CARE
SPINAL CSF LEAK FOUNDATION

BLOGS AND RESOURCES

RIBBON RX
OUR INSTAGRAM
BRACED AND FUSED
CSF LEAK ASSOCIATION
MAHALA MARIEE
SPINAL CSF LEAK USA
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CHIARI MALFORMATION AND CCI

YOUTUBE

INSTAGRAM

CARING MEDICAL
MEGAN KLEE
RACHAEL ELIZABETH
OUR INSTAGRAM
ANDREA MARIE EM
ATHEA EDS
BRACED AND FUSED
CHIARI MALFORMATION
CHIARI SUPPORT
CHIARI UPLIFTS
CHRISTIE WITH CHIARI
MYSTERY ELLES
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Resources gathered and webpage designed by Kimberly Czotter. Last updated Feb 28, 2022.

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