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
Primary Hepatic Neuroendocrine Carcinoma (PHNEC) is an extremely rare, high‑grade neuroendocrine malignancy that arises primarily in the liver rather than representing metastasis from another site.
Learn more: netrf.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: netrf.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 10, 2026 at 3:01 PM
Primary Hepatic Neuroendocrine Carcinoma (PHNEC) is an extremely rare, high‑grade neuroendocrine malignancy that arises primarily in the liver rather than representing metastasis from another site.
Learn more: netrf.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: netrf.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Pallister-Killian Mosaic Syndrome (tetrasomy 12p) is a rare chromosomal disorder in which some cells carry at least four copies of the short arm of chromosome 12.
Learn more: www.pkskids.net
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.pkskids.net
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 9, 2026 at 3:03 PM
Pallister-Killian Mosaic Syndrome (tetrasomy 12p) is a rare chromosomal disorder in which some cells carry at least four copies of the short arm of chromosome 12.
Learn more: www.pkskids.net
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.pkskids.net
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Melioidosis (Whitmore’s disease) is a rare infectious disease caused by the environmental bacterium Burkholderia pseudomallei, which lives in soil and water in tropical regions.
Learn more: www.melioidosis.info
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Learn more: www.melioidosis.info
You may be rare, but you're not alone!
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January 8, 2026 at 3:02 PM
Melioidosis (Whitmore’s disease) is a rare infectious disease caused by the environmental bacterium Burkholderia pseudomallei, which lives in soil and water in tropical regions.
Learn more: www.melioidosis.info
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.melioidosis.info
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Pulmonary Veno-Occlusive Disease (PVOD) is a very rare, progressive form of pulmonary hypertension caused by blockage of the small veins in the lungs.
Learn more: phassociation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: phassociation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 7, 2026 at 3:03 PM
Pulmonary Veno-Occlusive Disease (PVOD) is a very rare, progressive form of pulmonary hypertension caused by blockage of the small veins in the lungs.
Learn more: phassociation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: phassociation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Keratitis-Ichthyosis-Deafness (KID) Syndrome is a rare, genetic multisystem disorder characterized by abnormal skin thickening, eye surface disease & sensorineural hearing loss present from infancy
Learn more buff.ly/eANF5yi
You may be rare, but you're not alone!
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Learn more buff.ly/eANF5yi
You may be rare, but you're not alone!
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January 6, 2026 at 3:02 PM
Keratitis-Ichthyosis-Deafness (KID) Syndrome is a rare, genetic multisystem disorder characterized by abnormal skin thickening, eye surface disease & sensorineural hearing loss present from infancy
Learn more buff.ly/eANF5yi
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more buff.ly/eANF5yi
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Spondyloepiphyseal Dysplasia Congenita (SEDC) is a rare genetic disorder causing short stature, with spinal and long bone abnormalities visible at birth.
Learn more: buff.ly/6IqQSyJ
You may be rare, but you're not alone!
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Learn more: buff.ly/6IqQSyJ
You may be rare, but you're not alone!
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January 5, 2026 at 3:01 PM
Spondyloepiphyseal Dysplasia Congenita (SEDC) is a rare genetic disorder causing short stature, with spinal and long bone abnormalities visible at birth.
Learn more: buff.ly/6IqQSyJ
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/6IqQSyJ
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Congenital Dyserythropoietic Anemia Type II (CDA II) is a rare blood disorder in which red blood cells are produced abnormally, leading to mild‑to‑moderate anemia, jaundice, & enlarged spleen.
Learn more: buff.ly/mg7LWDI
You may be rare, but you're not alone!
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Learn more: buff.ly/mg7LWDI
You may be rare, but you're not alone!
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January 4, 2026 at 3:00 PM
Congenital Dyserythropoietic Anemia Type II (CDA II) is a rare blood disorder in which red blood cells are produced abnormally, leading to mild‑to‑moderate anemia, jaundice, & enlarged spleen.
Learn more: buff.ly/mg7LWDI
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/mg7LWDI
You may be rare, but you're not alone!
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Wyburn-Mason syndrome is a rare, nonhereditary congenital phakomatosis characterized by large arteriovenous malformations (AVMs) involving the retina, brain, and facial/orbital structures.
Learn more: taafonline.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: taafonline.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 3, 2026 at 3:01 PM
Wyburn-Mason syndrome is a rare, nonhereditary congenital phakomatosis characterized by large arteriovenous malformations (AVMs) involving the retina, brain, and facial/orbital structures.
Learn more: taafonline.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: taafonline.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Multiple acyl-CoA dehydrogenase deficiency (MADD) is a rare inherited disorder of fatty acid, amino acid, and choline metabolism that impairs the body’s ability to break down fats and proteins for energy.
Learn more umdf.org
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#rareDisease #rareDiseaseAwareness
Learn more umdf.org
You may be rare, but you're not alone!
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January 2, 2026 at 3:03 PM
Multiple acyl-CoA dehydrogenase deficiency (MADD) is a rare inherited disorder of fatty acid, amino acid, and choline metabolism that impairs the body’s ability to break down fats and proteins for energy.
Learn more umdf.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more umdf.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Greig Cephalopolysyndactyly Syndrome (GCPS) is a rare genetic disorder that affects development of the limbs, head, and face, typically causing extra fingers or toes and distinctive facial features
Learn more buff.ly/4aDD8d3
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more buff.ly/4aDD8d3
You may be rare, but you're not alone!
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January 1, 2026 at 3:01 PM
Greig Cephalopolysyndactyly Syndrome (GCPS) is a rare genetic disorder that affects development of the limbs, head, and face, typically causing extra fingers or toes and distinctive facial features
Learn more buff.ly/4aDD8d3
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more buff.ly/4aDD8d3
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Gitelman Syndrome is a rare inherited kidney disorder causing excessive loss of salt and minerals, leading to low potassium and magnesium levels, and reduced calcium in urine.
Learn more: gitelmansyndrome.co.uk
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: gitelmansyndrome.co.uk
You may be rare, but you're not alone!
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December 31, 2025 at 3:03 PM
Gitelman Syndrome is a rare inherited kidney disorder causing excessive loss of salt and minerals, leading to low potassium and magnesium levels, and reduced calcium in urine.
Learn more: gitelmansyndrome.co.uk
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: gitelmansyndrome.co.uk
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Intestinal Lymphangiectasia is a rare disorder in which the lymphatic vessels of the small intestine are abnormally dilated, causing leakage of lymph into the gut and protein‑losing enteropathy.
Learn more: buff.ly/6qMsgOD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/6qMsgOD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 30, 2025 at 3:02 PM
Intestinal Lymphangiectasia is a rare disorder in which the lymphatic vessels of the small intestine are abnormally dilated, causing leakage of lymph into the gut and protein‑losing enteropathy.
Learn more: buff.ly/6qMsgOD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/6qMsgOD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Primary Hyperoxaluria is a rare inherited disorder of glyoxylate metabolism that causes overproduction of oxalate, leading to calcium oxalate crystal deposition in the kidneys and urinary tract.
Learn more: ohf.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: ohf.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 29, 2025 at 3:03 PM
Primary Hyperoxaluria is a rare inherited disorder of glyoxylate metabolism that causes overproduction of oxalate, leading to calcium oxalate crystal deposition in the kidneys and urinary tract.
Learn more: ohf.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: ohf.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Constitutional Mismatch Repair Deficiency (CMMRD) is a rare, inherited cancer predisposition syndrome caused by biallelic pathogenic variants in DNA mismatch repair genes.
Learn More: krishnanfamilyfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn More: krishnanfamilyfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 28, 2025 at 3:02 PM
Constitutional Mismatch Repair Deficiency (CMMRD) is a rare, inherited cancer predisposition syndrome caused by biallelic pathogenic variants in DNA mismatch repair genes.
Learn More: krishnanfamilyfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn More: krishnanfamilyfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Whipple disease is a rare systemic infectious disease caused by the bacterium Tropheryma whipplei that primarily affects the small intestine, leading to malabsorption and weight loss.
Learn more: buff.ly/WIaptwb
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/WIaptwb
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
December 27, 2025 at 3:01 PM
Whipple disease is a rare systemic infectious disease caused by the bacterium Tropheryma whipplei that primarily affects the small intestine, leading to malabsorption and weight loss.
Learn more: buff.ly/WIaptwb
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: buff.ly/WIaptwb
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!
#rareDisease #rareDiseaseAwareness
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!
#rareDisease #rareDiseaseAwareness
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!
#rareDisease #rareDiseaseAwareness
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!
#rareDisease #rareDiseaseAwareness
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!
#rareDisease #rareDiseaseAwareness
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!
#rareDisease #rareDiseaseAwareness
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