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
C3 Glomerulopathy (C3G) is an ultra-rare kidney disease caused by disregulation of the alternative pathway of the complement system, leading to dominant C3 deposition in the glomeruli.
Learn more: kidneeds.lab.uiowa.edu
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: kidneeds.lab.uiowa.edu
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 26, 2025 at 3:01 PM
C3 Glomerulopathy (C3G) is an ultra-rare kidney disease caused by disregulation of the alternative pathway of the complement system, leading to dominant C3 deposition in the glomeruli.
Learn more: kidneeds.lab.uiowa.edu
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: kidneeds.lab.uiowa.edu
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Superior Mesenteric Artery Syndrome (SMAS) is a rare digestive disorder in which the third portion of the duodenum is compressed between the abdominal aorta and the superior mesenteric artery.
Learn more: www.smasyndrome.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.smasyndrome.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 25, 2025 at 3:01 PM
Superior Mesenteric Artery Syndrome (SMAS) is a rare digestive disorder in which the third portion of the duodenum is compressed between the abdominal aorta and the superior mesenteric artery.
Learn more: www.smasyndrome.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.smasyndrome.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Mitochondrial Neurogastrointestinal Encephalomyopathy (MNGIE) - An ultra-rare, progressive disorder caused by loss of thymidine phosphorylase, leading to toxic nucleoside buildup.
Learn more: umdf.org/mngie/
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: umdf.org/mngie/
You may be rare, but you're not alone!
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December 24, 2025 at 3:03 PM
Mitochondrial Neurogastrointestinal Encephalomyopathy (MNGIE) - An ultra-rare, progressive disorder caused by loss of thymidine phosphorylase, leading to toxic nucleoside buildup.
Learn more: umdf.org/mngie/
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: umdf.org/mngie/
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Diffuse Panbronchiolitis (DPB) is a rare, chronic inflammatory lung disease that primarily affects the small airways (respiratory bronchioles) throughout both lungs.
Learn more: buff.ly/XtUgCbg
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/XtUgCbg
You may be rare, but you're not alone!
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December 23, 2025 at 3:02 PM
Diffuse Panbronchiolitis (DPB) is a rare, chronic inflammatory lung disease that primarily affects the small airways (respiratory bronchioles) throughout both lungs.
Learn more: buff.ly/XtUgCbg
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/XtUgCbg
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Pulmonary Alveolar Microlithiasis (PAM) is a rare genetic lung disease where tiny calcium phosphate deposits accumulate in the alveoli, causing progressive lung tissue stiffening and damage.
Learn more: buff.ly/XEyUlz9
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/XEyUlz9
You may be rare, but you're not alone!
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December 22, 2025 at 3:02 PM
Pulmonary Alveolar Microlithiasis (PAM) is a rare genetic lung disease where tiny calcium phosphate deposits accumulate in the alveoli, causing progressive lung tissue stiffening and damage.
Learn more: buff.ly/XEyUlz9
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/XEyUlz9
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Pleuroparenchymal Fibroelastosis (PPFE) is a rare interstitial lung disease characterized by fibrotic thickening of the pleura and adjacent subpleural lung tissue, usually in the upper lobes.
Learn more pulmonaryfibrosis.org
You may be rare, but you're not alone!
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Learn more pulmonaryfibrosis.org
You may be rare, but you're not alone!
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December 21, 2025 at 3:02 PM
Pleuroparenchymal Fibroelastosis (PPFE) is a rare interstitial lung disease characterized by fibrotic thickening of the pleura and adjacent subpleural lung tissue, usually in the upper lobes.
Learn more pulmonaryfibrosis.org
You may be rare, but you're not alone!
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Learn more pulmonaryfibrosis.org
You may be rare, but you're not alone!
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Pulmonary Alveolar Proteinosis (PAP) is a rare lung disease characterized by the accumulation of surfactant and protein- and fat-rich material in the alveoli, leading to breathing difficulties.
Learn more: papfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: papfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 20, 2025 at 3:02 PM
Pulmonary Alveolar Proteinosis (PAP) is a rare lung disease characterized by the accumulation of surfactant and protein- and fat-rich material in the alveoli, leading to breathing difficulties.
Learn more: papfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: papfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Lymphangioleiomyomatosis (LAM) is a rare, progressive lung disease where abnormal smooth muscle-like cells grow in the lungs, lymphatic system, and kidneys.
Learn more: lamfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: lamfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 19, 2025 at 3:03 PM
Lymphangioleiomyomatosis (LAM) is a rare, progressive lung disease where abnormal smooth muscle-like cells grow in the lungs, lymphatic system, and kidneys.
Learn more: lamfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: lamfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Adult idiopathic neutropenia is a rare condition in adults characterized by persistently low neutrophil counts without identifiable causes.
Learn more: severe-chronic-neutropenia.org/en
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: severe-chronic-neutropenia.org/en
You may be rare, but you're not alone!
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December 18, 2025 at 3:03 PM
Adult idiopathic neutropenia is a rare condition in adults characterized by persistently low neutrophil counts without identifiable causes.
Learn more: severe-chronic-neutropenia.org/en
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: severe-chronic-neutropenia.org/en
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Adult-onset Immunodeficiency Syndrome (AOID) is a rare immune disorder where high-titer autoantibodies neutralize interferon-gamma, leading to severe, widespread opportunistic infections.
Learn more: ipopi.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: ipopi.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 17, 2025 at 3:02 PM
Adult-onset Immunodeficiency Syndrome (AOID) is a rare immune disorder where high-titer autoantibodies neutralize interferon-gamma, leading to severe, widespread opportunistic infections.
Learn more: ipopi.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: ipopi.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Immune-mediated necrotizing myopathy (IMNM) is a rare autoimmune muscle disease marked by severe, symmetric weakness of the proximal muscles and significant muscle fiber necrosis.
Learn more: myositis.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: myositis.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 16, 2025 at 3:01 PM
Immune-mediated necrotizing myopathy (IMNM) is a rare autoimmune muscle disease marked by severe, symmetric weakness of the proximal muscles and significant muscle fiber necrosis.
Learn more: myositis.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: myositis.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Adult-onset Autoimmune Myasthenia Gravis is a rare chronic disorder causing fluctuating muscle weakness, often starting with the eyes.
Learn more: myasthenia.org
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Learn more: myasthenia.org
You're not alone!
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December 15, 2025 at 3:04 PM
Adult-onset Autoimmune Myasthenia Gravis is a rare chronic disorder causing fluctuating muscle weakness, often starting with the eyes.
Learn more: myasthenia.org
You're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: myasthenia.org
You're not alone!
#rareDisease #rareDiseaseAwareness
Waardenburg–Shah syndrome (Waardenburg syndrome type IV) is a very rare genetic neurocristopathy characterized by the combination of Waardenburg features with Hirschsprung disease.
Learn more: buff.ly/FojYB5P
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/FojYB5P
You may be rare, but you're not alone!
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December 14, 2025 at 3:01 PM
Waardenburg–Shah syndrome (Waardenburg syndrome type IV) is a very rare genetic neurocristopathy characterized by the combination of Waardenburg features with Hirschsprung disease.
Learn more: buff.ly/FojYB5P
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/FojYB5P
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
22q11.2 Duplication Syndrome is a chromosomal disorder caused by an extra copy of a small segment of chromosome 22 at position q11.2, leading to highly variable features even within the same family.
Learn more: 22q.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: 22q.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 13, 2025 at 3:02 PM
22q11.2 Duplication Syndrome is a chromosomal disorder caused by an extra copy of a small segment of chromosome 22 at position q11.2, leading to highly variable features even within the same family.
Learn more: 22q.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: 22q.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Hereditary Sensory and Autonomic Neuropathy Type 1 (HSAN1) is an inherited neurological disorder that progresses slowly. It primarily leads to a loss of sensation, especially in the distal limbs.
Learn more: www.hnf-cure.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.hnf-cure.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 12, 2025 at 3:05 PM
Hereditary Sensory and Autonomic Neuropathy Type 1 (HSAN1) is an inherited neurological disorder that progresses slowly. It primarily leads to a loss of sensation, especially in the distal limbs.
Learn more: www.hnf-cure.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.hnf-cure.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Capgras Syndrome is a rare neuropsychiatric disorder where one believes an imposter has replaced someone close, despite recognizing their features.
Learn more: buff.ly/v9E2Tha
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/v9E2Tha
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 11, 2025 at 3:04 PM
Capgras Syndrome is a rare neuropsychiatric disorder where one believes an imposter has replaced someone close, despite recognizing their features.
Learn more: buff.ly/v9E2Tha
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/v9E2Tha
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Delusional Infestation (DI), or Ekbom’s Syndrome, is a rare psychiatric disorder where individuals have a persistent false belief of being infested with parasites or insects.
Learn more: buff.ly/7c1vYlU
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/7c1vYlU
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 10, 2025 at 3:03 PM
Delusional Infestation (DI), or Ekbom’s Syndrome, is a rare psychiatric disorder where individuals have a persistent false belief of being infested with parasites or insects.
Learn more: buff.ly/7c1vYlU
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/7c1vYlU
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Visual Snow Syndrome (VSS) is a chronic, rare neurological condition marked by a persistent visual disturbance resembling the static seen on an untuned analog TV screen.
Learn more: www.visualsnowinitiative.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.visualsnowinitiative.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 9, 2025 at 3:02 PM
Visual Snow Syndrome (VSS) is a chronic, rare neurological condition marked by a persistent visual disturbance resembling the static seen on an untuned analog TV screen.
Learn more: www.visualsnowinitiative.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.visualsnowinitiative.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Charles Bonnet Syndrome (CBS) is a condition where mentally healthy people with significant vision loss experience vivid, silent visual hallucinations
Learn more www.charlesbonnetsyndrome.uk
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more www.charlesbonnetsyndrome.uk
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 8, 2025 at 3:03 PM
Charles Bonnet Syndrome (CBS) is a condition where mentally healthy people with significant vision loss experience vivid, silent visual hallucinations
Learn more www.charlesbonnetsyndrome.uk
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more www.charlesbonnetsyndrome.uk
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Persistent Genital Arousal Disorder (PGAD) is a rare condition involving spontaneous, persistent, and unwanted genital arousal without sexual desire or stimulation.
Learn more: buff.ly/H8EpWrE
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/H8EpWrE
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 7, 2025 at 3:02 PM
Persistent Genital Arousal Disorder (PGAD) is a rare condition involving spontaneous, persistent, and unwanted genital arousal without sexual desire or stimulation.
Learn more: buff.ly/H8EpWrE
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/H8EpWrE
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Epidermodysplasia Verruciformis (EV) is a rare skin disorder causing wart-like growths due to HPV infections. These growths can be widespread, disfiguring, and may lead to skin cancer.
Learn more: buff.ly/oRuA8Xx
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/oRuA8Xx
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 6, 2025 at 3:02 PM
Epidermodysplasia Verruciformis (EV) is a rare skin disorder causing wart-like growths due to HPV infections. These growths can be widespread, disfiguring, and may lead to skin cancer.
Learn more: buff.ly/oRuA8Xx
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/oRuA8Xx
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Trimethylaminuria (TMAU) is a rare disorder where the body fails to break down trimethylamine, causing a strong fish-like odor in sweat, breath, urine, and other secretions.
Learn more: thinkgenetic.org/diseases/tri...
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: thinkgenetic.org/diseases/tri...
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 5, 2025 at 3:04 PM
Trimethylaminuria (TMAU) is a rare disorder where the body fails to break down trimethylamine, causing a strong fish-like odor in sweat, breath, urine, and other secretions.
Learn more: thinkgenetic.org/diseases/tri...
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: thinkgenetic.org/diseases/tri...
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Cronkhite-Canada Syndrome is a rare, acquired gastrointestinal disorder marked by widespread polyps in the digestive tract and unique skin, hair, and nail changes. It typically affects older adults
Learn more buff.ly/nN0K1rH
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more buff.ly/nN0K1rH
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 4, 2025 at 3:03 PM
Cronkhite-Canada Syndrome is a rare, acquired gastrointestinal disorder marked by widespread polyps in the digestive tract and unique skin, hair, and nail changes. It typically affects older adults
Learn more buff.ly/nN0K1rH
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more buff.ly/nN0K1rH
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Familial Cold Autoinflammatory Syndrome (FCAS), also called familial cold urticaria, is a rare genetic disorder. It is marked by recurrent rash, fever, and joint pain episodes.
Learn more: autoinflammatory.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: autoinflammatory.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 3, 2025 at 3:02 PM
Familial Cold Autoinflammatory Syndrome (FCAS), also called familial cold urticaria, is a rare genetic disorder. It is marked by recurrent rash, fever, and joint pain episodes.
Learn more: autoinflammatory.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: autoinflammatory.org
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