CT Rare Advocate
@rarectadvocate.com
Rare Disease advocate in CT. Raising Awareness and advocating for Rare Diseases patients and caregivers.
🔗 https://rarectadvocate.com - Archive and Rare Disease Resources
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
🔗 https://rarectadvocate.com - Archive and Rare Disease Resources
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Dercum’s disease, also known as adiposis dolorosa, is a rare disorder characterized by multiple, painful growths of fatty tissue (lipomas), most commonly affecting adults, particularly women.
Learn more: dercums.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dercums.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 23, 2025 at 3:02 PM
Dercum’s disease, also known as adiposis dolorosa, is a rare disorder characterized by multiple, painful growths of fatty tissue (lipomas), most commonly affecting adults, particularly women.
Learn more: dercums.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dercums.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Arachnoiditis is a rare, chronic inflammatory disorder involving the arachnoid membrane that surrounds the nerves of the spinal cord, resulting in debilitating pain and neurological symptoms.
Learn more: www.acmcrn.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.acmcrn.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 22, 2025 at 3:01 PM
Arachnoiditis is a rare, chronic inflammatory disorder involving the arachnoid membrane that surrounds the nerves of the spinal cord, resulting in debilitating pain and neurological symptoms.
Learn more: www.acmcrn.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.acmcrn.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Urbach–Wiethe disease, or lipoid proteinosis, is a rare genetic disorder causing hyaline buildup in skin and membranes, often affecting the voice from childhood.
Learn more: buff.ly/HClfIyM
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/HClfIyM
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 21, 2025 at 3:02 PM
Urbach–Wiethe disease, or lipoid proteinosis, is a rare genetic disorder causing hyaline buildup in skin and membranes, often affecting the voice from childhood.
Learn more: buff.ly/HClfIyM
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/HClfIyM
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Auto-Brewery Syndrome (ABS), also called gut fermentation syndrome, is a rare disorder in which yeast or bacteria in the digestive system convert carbohydrates into ethanol.
Learn more: www.autobrewery.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.autobrewery.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 20, 2025 at 3:04 PM
Auto-Brewery Syndrome (ABS), also called gut fermentation syndrome, is a rare disorder in which yeast or bacteria in the digestive system convert carbohydrates into ethanol.
Learn more: www.autobrewery.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.autobrewery.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Osteoclastic Giant Cell Tumor of the Pancreas (OGCTP) is a rare pancreatic tumor featuring multinucleated osteoclast-like giant cells and mononuclear cells.
Learn more: pancan.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: pancan.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 19, 2025 at 3:05 PM
Osteoclastic Giant Cell Tumor of the Pancreas (OGCTP) is a rare pancreatic tumor featuring multinucleated osteoclast-like giant cells and mononuclear cells.
Learn more: pancan.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: pancan.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Field's Disease is an extremely rare progressive neuromuscular disorder that causes muscular degeneration and painful involuntary spasms, primarily known to affect only two Welsh twins.
Learn more: buff.ly/apqpvXI
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/apqpvXI
You may be rare, but you're not alone!
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November 18, 2025 at 3:04 PM
Field's Disease is an extremely rare progressive neuromuscular disorder that causes muscular degeneration and painful involuntary spasms, primarily known to affect only two Welsh twins.
Learn more: buff.ly/apqpvXI
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/apqpvXI
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
STING-associated vasculopathy with onset in infancy (SAVI) is a rare genetic disorder characterized by continuous activation of the STING protein.
Learn more: buff.ly/lUfMD4N
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/lUfMD4N
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 17, 2025 at 3:03 PM
STING-associated vasculopathy with onset in infancy (SAVI) is a rare genetic disorder characterized by continuous activation of the STING protein.
Learn more: buff.ly/lUfMD4N
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/lUfMD4N
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
ZC4H2 Associated Rare Disorders (ZARD) is an ultra-rare genetic disorder impacting both central and peripheral nervous systems, caused by pathogenic variants in the X-linked ZC4H2 gene.
Learn more: www.zc4h2foundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.zc4h2foundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 16, 2025 at 3:02 PM
ZC4H2 Associated Rare Disorders (ZARD) is an ultra-rare genetic disorder impacting both central and peripheral nervous systems, caused by pathogenic variants in the X-linked ZC4H2 gene.
Learn more: www.zc4h2foundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.zc4h2foundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Zimmermann-Laband syndrome (ZLS) is a rare genetic disorder marked by gingival fibromatosis, distinct facial features, and underdeveloped or missing nails and terminal phalanges in fingers and toes
Learn more buff.ly/FmbrN1U
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more buff.ly/FmbrN1U
You may be rare, but you're not alone!
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November 15, 2025 at 3:03 PM
Zimmermann-Laband syndrome (ZLS) is a rare genetic disorder marked by gingival fibromatosis, distinct facial features, and underdeveloped or missing nails and terminal phalanges in fingers and toes
Learn more buff.ly/FmbrN1U
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more buff.ly/FmbrN1U
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Ribose-5-Phosphate Isomerase Deficiency is an extremely rare inherited metabolic disorder caused by mutations in the ribose-5-phosphate isomerase gene, disrupting the pentose phosphate pathway.
Learn more: buff.ly/fiB6qjU
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/fiB6qjU
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 14, 2025 at 3:03 PM
Ribose-5-Phosphate Isomerase Deficiency is an extremely rare inherited metabolic disorder caused by mutations in the ribose-5-phosphate isomerase gene, disrupting the pentose phosphate pathway.
Learn more: buff.ly/fiB6qjU
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/fiB6qjU
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Primary Hyperaldosteronism (Conn’s Syndrome) is a condition in which the adrenal glands produce excess aldosterone, leading to high blood pressure and low blood potassium levels.
Learn more: primaryaldosteronism.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: primaryaldosteronism.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 13, 2025 at 3:04 PM
Primary Hyperaldosteronism (Conn’s Syndrome) is a condition in which the adrenal glands produce excess aldosterone, leading to high blood pressure and low blood potassium levels.
Learn more: primaryaldosteronism.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: primaryaldosteronism.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Cotard's Syndrome (Walking Corpse Syndrome) is a rare neuropsychiatric disorder in which individuals have the delusional belief that they are dead, nonexistent, or missing vital internal organs.
Learn more: buff.ly/CA38HqD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/CA38HqD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 12, 2025 at 3:02 PM
Cotard's Syndrome (Walking Corpse Syndrome) is a rare neuropsychiatric disorder in which individuals have the delusional belief that they are dead, nonexistent, or missing vital internal organs.
Learn more: buff.ly/CA38HqD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/CA38HqD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Amyotrophic Lateral Sclerosis (ALS) is a rare, progressive disorder affecting motor neurons, causing muscle weakness, atrophy, and ultimately loss of voluntary movement and respiratory failure.
Learn more: www.als.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.als.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 11, 2025 at 3:04 PM
Amyotrophic Lateral Sclerosis (ALS) is a rare, progressive disorder affecting motor neurons, causing muscle weakness, atrophy, and ultimately loss of voluntary movement and respiratory failure.
Learn more: www.als.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.als.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Jumping Frenchman of Maine Syndrome is a rare neuropsychiatric disorder marked by an exaggerated startle response, causing uncontrollable jumping and behaviors when exposed to sudden stimuli.
Learn more: buff.ly/SsCClol
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/SsCClol
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 10, 2025 at 3:03 PM
Jumping Frenchman of Maine Syndrome is a rare neuropsychiatric disorder marked by an exaggerated startle response, causing uncontrollable jumping and behaviors when exposed to sudden stimuli.
Learn more: buff.ly/SsCClol
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/SsCClol
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Alien Hand Syndrome causes a hand or limb to move involuntarily and purposefully without the person's conscious control. The affected limb can perform complex actions on its own.
Learn more: buff.ly/zbQQKpo
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/zbQQKpo
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 9, 2025 at 3:01 PM
Alien Hand Syndrome causes a hand or limb to move involuntarily and purposefully without the person's conscious control. The affected limb can perform complex actions on its own.
Learn more: buff.ly/zbQQKpo
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/zbQQKpo
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Xeroderma Pigmentosum (XP) is a rare genetic disorder marked by extreme UV light sensitivity, leading to severe skin and eye damage, increased skin cancer risk, and possible neurological issues.
Learn more: www.xps.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.xps.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 8, 2025 at 10:06 PM
Xeroderma Pigmentosum (XP) is a rare genetic disorder marked by extreme UV light sensitivity, leading to severe skin and eye damage, increased skin cancer risk, and possible neurological issues.
Learn more: www.xps.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.xps.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Exploding Head Syndrome (EHS) is a rare, benign sleep disorder characterized by the perception of sudden loud noises or explosive sensations in the head during sleep transitions.
Learn more: buff.ly/z4Ry9YX
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/z4Ry9YX
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 7, 2025 at 3:03 PM
Exploding Head Syndrome (EHS) is a rare, benign sleep disorder characterized by the perception of sudden loud noises or explosive sensations in the head during sleep transitions.
Learn more: buff.ly/z4Ry9YX
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/z4Ry9YX
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Uner Tan Syndrome (UTS) is a rare genetic disorder characterized by habitual quadrupedal locomotion, intellectual disability, and rudimentary or severely impaired speech.
Learn more: buff.ly/lEMW6cR
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/lEMW6cR
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 6, 2025 at 3:02 PM
Uner Tan Syndrome (UTS) is a rare genetic disorder characterized by habitual quadrupedal locomotion, intellectual disability, and rudimentary or severely impaired speech.
Learn more: buff.ly/lEMW6cR
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/lEMW6cR
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
250 days. 250 Rare Diseases. Today I’m honored to share my 250th Rare Disease —raising awareness and hope for all impacted by rare conditions. Thank you for being on this journey with me! 🦓
Learn more: rarectadvocate.com
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: rarectadvocate.com
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
CT Rare Advocate - Rare Disease Information & Advocacy
Supporting rare disease patients, caregivers, and advocates with comprehensive information, resources, and daily awareness campaigns. You may be rare, but you are not alone!
rarectadvocate.com
November 5, 2025 at 3:30 PM
250 days. 250 Rare Diseases. Today I’m honored to share my 250th Rare Disease —raising awareness and hope for all impacted by rare conditions. Thank you for being on this journey with me! 🦓
Learn more: rarectadvocate.com
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: rarectadvocate.com
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Foreign Accent Syndrome (FAS) is an extremely rare neurological condition in which a person suddenly begins speaking with a speech pattern that is perceived as a foreign accent.
Learn more: buff.ly/ZNYIVeV
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/ZNYIVeV
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 5, 2025 at 3:04 PM
Foreign Accent Syndrome (FAS) is an extremely rare neurological condition in which a person suddenly begins speaking with a speech pattern that is perceived as a foreign accent.
Learn more: buff.ly/ZNYIVeV
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/ZNYIVeV
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Ohtahara Syndrome is a rare, severe neurological disorder, marked by seizures starting within the first three months of life, often accompanied by developmental delays.
Learn more: buff.ly/aDcUjFg
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/aDcUjFg
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 4, 2025 at 3:02 PM
Ohtahara Syndrome is a rare, severe neurological disorder, marked by seizures starting within the first three months of life, often accompanied by developmental delays.
Learn more: buff.ly/aDcUjFg
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/aDcUjFg
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Rasmussen Encephalitis is a rare neurological disorder marked by chronic inflammation in one brain hemisphere, leading to drug-resistant seizures, motor issues, and cognitive decline.
Learn more: buff.ly/XG7cUVI
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/XG7cUVI
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 3, 2025 at 3:02 PM
Rasmussen Encephalitis is a rare neurological disorder marked by chronic inflammation in one brain hemisphere, leading to drug-resistant seizures, motor issues, and cognitive decline.
Learn more: buff.ly/XG7cUVI
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/XG7cUVI
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Alkaptonuria (AKU) / Black Bone Disease is a rare inherited metabolic disorder caused by a deficiency in homogentisate 1,2-dioxygenase, leading to the accumulation of homogentisic acid in the body.
Learn more akusociety.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more akusociety.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 2, 2025 at 3:01 PM
Alkaptonuria (AKU) / Black Bone Disease is a rare inherited metabolic disorder caused by a deficiency in homogentisate 1,2-dioxygenase, leading to the accumulation of homogentisic acid in the body.
Learn more akusociety.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more akusociety.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Alice in Wonderland Syndrome (AIWS) is a rare neurological disorder causing perceptual distortions, including changes in visual perception, body image, and experience of time.
Learn more: buff.ly/auPjJOY
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/auPjJOY
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 1, 2025 at 2:02 PM
Alice in Wonderland Syndrome (AIWS) is a rare neurological disorder causing perceptual distortions, including changes in visual perception, body image, and experience of time.
Learn more: buff.ly/auPjJOY
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/auPjJOY
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Fibrodysplasia Ossificans Progressiva (FOP) is a rare genetic disorder where connective tissue gradually turns into bone, severely restricting movement and function over time.
Learn more: www.ifopa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.ifopa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
October 31, 2025 at 2:06 PM
Fibrodysplasia Ossificans Progressiva (FOP) is a rare genetic disorder where connective tissue gradually turns into bone, severely restricting movement and function over time.
Learn more: www.ifopa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.ifopa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness