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
Ambras syndrome is a rare congenital disorder where individuals have an overgrowth of soft vellus hair covering most of the body, except for palms, soles, and mucous membranes.
Learn more: buff.ly/Unsl53I
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/Unsl53I
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 2, 2025 at 3:03 PM
Ambras syndrome is a rare congenital disorder where individuals have an overgrowth of soft vellus hair covering most of the body, except for palms, soles, and mucous membranes.
Learn more: buff.ly/Unsl53I
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/Unsl53I
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Morgellons Disease is a rare, controversial skin disorder marked by multicolored fibers appearing on or protruding from the skin, often with chronic skin wounds and unusual sensations.
Learn more: morgellons.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: morgellons.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 1, 2025 at 3:03 PM
Morgellons Disease is a rare, controversial skin disorder marked by multicolored fibers appearing on or protruding from the skin, often with chronic skin wounds and unusual sensations.
Learn more: morgellons.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: morgellons.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Fibromuscular Dysplasia (FMD) is a rare disease involving abnormal cell growth in medium-sized artery walls, causing narrowing, bulging, or tearing, often affecting arteries to the kidneys and brain.
Learn more: fmdsa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: fmdsa.org
You may be rare, but you're not alone!
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November 30, 2025 at 3:01 PM
Fibromuscular Dysplasia (FMD) is a rare disease involving abnormal cell growth in medium-sized artery walls, causing narrowing, bulging, or tearing, often affecting arteries to the kidneys and brain.
Learn more: fmdsa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: fmdsa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Dopa-Responsive Dystonia (DRD) refers to a group of neurometabolic disorders characterized by involuntary muscle contractions, dystonia, and movement difficulties
Learn more: buff.ly/lIGeOhZ
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/lIGeOhZ
You may be rare, but you're not alone!
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November 29, 2025 at 3:02 PM
Dopa-Responsive Dystonia (DRD) refers to a group of neurometabolic disorders characterized by involuntary muscle contractions, dystonia, and movement difficulties
Learn more: buff.ly/lIGeOhZ
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/lIGeOhZ
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
CADASIL is a rare inherited disease that affects small blood vessels in the brain, leading to recurrent strokes, migraines, and progressive neurological decline.
Learn more: cadasil.wisc.edu
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: cadasil.wisc.edu
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 28, 2025 at 3:04 PM
CADASIL is a rare inherited disease that affects small blood vessels in the brain, leading to recurrent strokes, migraines, and progressive neurological decline.
Learn more: cadasil.wisc.edu
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: cadasil.wisc.edu
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Hashimoto's encephalopathy (steroid-responsive encephalopathy associated with autoimmune thyroiditis (SREAT)). It involves brain dysfunction linked to thyroid autoantibodies.
Learn more: hesaonline.info
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: hesaonline.info
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 27, 2025 at 3:03 PM
Hashimoto's encephalopathy (steroid-responsive encephalopathy associated with autoimmune thyroiditis (SREAT)). It involves brain dysfunction linked to thyroid autoantibodies.
Learn more: hesaonline.info
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: hesaonline.info
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease in which the immune system mistakenly attacks healthy tissues throughout the body, causing widespread inflammation and organ involvement
Learn more lupus.org
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Learn more lupus.org
You may be rare, but you're not alone!
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November 26, 2025 at 3:03 PM
Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease in which the immune system mistakenly attacks healthy tissues throughout the body, causing widespread inflammation and organ involvement
Learn more lupus.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more lupus.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Familial Hemiplegic Migraine (FHM) is a rare, severe migraine with aura, hereditary in nature, characterized by episodes of muscle weakness on one side of the body, with other neurological symptoms
Learn more www.cacna1a.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more www.cacna1a.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 25, 2025 at 3:02 PM
Familial Hemiplegic Migraine (FHM) is a rare, severe migraine with aura, hereditary in nature, characterized by episodes of muscle weakness on one side of the body, with other neurological symptoms
Learn more www.cacna1a.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more www.cacna1a.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Anti-NMDA receptor encephalitis is a rare, autoimmune brain inflammation caused by antibodies targeting NMDA receptors, leading to rapid onset neuropsychiatric symptoms and other neurologic issues.
Learn more buff.ly/7Cn22gL
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more buff.ly/7Cn22gL
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 24, 2025 at 3:02 PM
Anti-NMDA receptor encephalitis is a rare, autoimmune brain inflammation caused by antibodies targeting NMDA receptors, leading to rapid onset neuropsychiatric symptoms and other neurologic issues.
Learn more buff.ly/7Cn22gL
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more buff.ly/7Cn22gL
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
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Learn more: dercums.org
You may be rare, but you're not alone!
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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!
#rareDisease #rareDiseaseAwareness
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!
#rareDisease #rareDiseaseAwareness
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!
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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