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CT Rare Advocate @rarectadvocate.com · 3h

Anti-GBM Disease (Goodpasture Syndrome) is a rare autoimmune disease where antibodies attack the kidneys and lungs, causing rapid kidney damage and lung bleeding within days to weeks. Learn more: dub.sh/anti-gbm You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Anti-GBM Disease, also known as Goodpasture Syndrome, a rare autoimmune disease in which antibodies attack small blood vessels in the kidneys and lungs. The card notes that it affects about 2 people per million worldwide and that the lungs are involved in about half of patients. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 01/10/2026

Peutz-Jeghers Syndrome is a rare inherited condition causing gastrointestinal polyps, distinctive dark spots around the mouth, and a lifetime cancer risk of roughly 83 percent by age 70. Learn more: dub.sh/peutz You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Peutz-Jeghers Syndrome, an inherited condition caused by STK11 gene mutations that leads to gastrointestinal polyps, characteristic dark spots around the mouth and on the hands, and a substantially elevated lifetime cancer risk. The card notes that overall cancer risk reaches about 83 percent by age 70. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 30/09/2026

Idiopathic Subglottic Stenosis (iSGS) is a rare airway disease in which unexplained scarring narrows the windpipe below the vocal cords, mostly in women. It is often mistaken for asthma. Learn more: dub.sh/SGS1 You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Idiopathic Subglottic Stenosis, or iSGS, a rare disease in which unexplained inflammation and scarring narrow the windpipe just below the vocal cords. The card notes that about 98 percent of patients are women, that noisy breathing is often mistaken for asthma, and that treatments range from endoscopic dilation to open airway surgery. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 29/09/2026

Balamuthia Infection is a rare, often fatal brain infection caused by a free-living ameba in soil, dust, and water. Early signs can include slow-healing skin wounds, fever, and headache. Learn more: dub.sh/BALA You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Balamuthia Infection, also called granulomatous amebic encephalitis, a rare and serious brain infection caused by a free-living ameba found in soil, dust, and water. The card notes that about 9 out of 10 people with the disease do not survive, and that early signs can include slow-healing skin wounds, fever, and headache. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 28/09/2026

I am excited to be an Exhibitor at Rare New England's 2026 Annual Conference, Advancing Rate Together! 💙 Turning Rare Disease Experience Into Advocacy Learn more: www.rarenewengland.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

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CT Rare Advocate @rarectadvocate.com · 28/09/2026

Schnitzler Syndrome is a rare adult-onset autoinflammatory disease causing a chronic non-itchy hive-like rash, recurring fevers, and bone pain. IL-1 blockers can bring rapid relief. Learn more: dub.sh/AIART You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Schnitzler Syndrome, a rare acquired autoinflammatory disease that causes a chronic hive-like rash together with an abnormal IgM protein in the blood. The card notes that roughly 15 to 20 percent of patients develop a lymphoproliferative disease, and that IL-1 blocking drugs such as anakinra can control symptoms. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 27/09/2026

Congenital Pulmonary Airway Malformation (CPAM): a rare birth defect where part of a lung forms as abnormal cystic tissue. Often found on prenatal ultrasound; surgery can treat it. Learn more: clmsociety.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Congenital Pulmonary Airway Malformation, or CPAM, a rare birth defect in which part of a lung develops as abnormal cystic tissue. The card notes that CPAM occurs in roughly 1 in 10,000 to 35,000 births and is often found on prenatal ultrasound. Key treatments include surgery. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 26/09/2026

Ataxia-Telangiectasia (A-T): a rare inherited disorder caused by ATM gene changes that affects the brain and immune system. Symptoms often start when toddlers learn to walk. No cure yet. Learn more: atcp.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Ataxia-Telangiectasia, also called A-T, a rare inherited disorder that affects the brain and immune system. The card notes that A-T is caused by changes in the ATM gene and that symptoms often begin in early childhood. Key symptoms include poor balance, slurred speech, and frequent infections. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 25/09/2026

Retinoblastoma: a rare childhood eye cancer that starts in the retina, the light-sensing tissue at the back of the eye. Caused by changes in the RB1 gene and is highly curable when found early Learn more dub.sh/eyec You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Retinoblastoma, a rare childhood eye cancer that starts in the retina and is caused by changes in the RB1 gene. The card notes that about 300 to 350 children are diagnosed in the U.S. each year and that more than 9 out of 10 are cured. Key symptoms include a white pupil and crossed eyes. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 24/09/2026

Duane Retraction Syndrome: a rare congenital eye movement disorder from abnormal nerve wiring. The eye can pull back into its socket when looking inward. Glasses, prisms, or surgery help. Learn more: dub.sh/aapos You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Duane Retraction Syndrome, a rare congenital eye movement disorder caused by an underdeveloped sixth cranial nerve. The card notes that it accounts for 1 to 5 percent of strabismus cases and that the eye can retract into its socket when looking inward. Key symptoms include limited eye movement and head turns. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 23/09/2026

Hypoplastic Left Heart Syndrome (HLHS): a rare congenital heart defect where the left side of the heart is underdeveloped. Often found on prenatal ultrasound; treated with staged surgeries. Learn more: littlehearts.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect in which the left side of the heart is severely underdeveloped. The card notes that HLHS is often detected on prenatal ultrasound and is treated with a series of three surgeries. Key symptoms include bluish skin color, fast breathing, and poor feeding. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 22/09/2026

Chronic Lymphocytic Leukemia (CLL): a slow-growing blood cancer often found on routine bloodwork. You may be rare, but you're not alone! rarectadvocate.com Learn more: cllsociety.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Chronic Lymphocytic Leukemia (CLL), a slow-growing blood cancer in which mature B lymphocytes build up in the blood, bone marrow, and lymph nodes. The card notes that about 22,760 people in the US are expected to be diagnosed in 2026 and that many are found through routine blood tests. Key treatments include watch and wait, BTK inhibitors, and fixed-duration venetoclax combinations. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 21/09/2026

Zellweger Syndrome is the most severe peroxisomal biogenesis disorder, caused by PEX gene mutations that leave infants without functioning peroxisomes from birth. Learn more: thegfpd.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Zellweger Syndrome, the most severe form of Zellweger spectrum disorder, caused by mutations in PEX genes that leave cells without functioning peroxisomes. The card notes most affected infants do not survive beyond their first year of life. Key symptoms include severe low muscle tone, distinctive facial features, and seizures. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 20/09/2026

Glycogen Storage Disease Type IV (Andersen Disease) is a rare metabolic disorder causing glycogen buildup in the liver, muscle, and heart, often leading to cirrhosis in infancy. Learn more: agsdus.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Glycogen Storage Disease Type IV, also called Andersen Disease, a rare metabolic disorder affecting an estimated one in 600,000 to 800,000 people worldwide. The card notes it causes abnormal glycogen buildup in the liver, muscle, and heart from a GBE1 gene defect. Key symptoms include failure to thrive, hepatosplenomegaly, and progressive liver cirrhosis. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 19/09/2026

Fanconi Anemia is a rare inherited DNA-repair disorder causing progressive bone marrow failure and a sharply increased risk of leukemia and solid tumors, from mutations in at least 22 genes. Learn more: fanconi.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Fanconi Anemia, a rare inherited DNA-repair disorder affecting an estimated one to five people per million. The card notes it causes progressive bone marrow failure and a markedly increased cancer risk, diagnosed via the chromosomal breakage test. Key symptoms include anemia, short stature, and thumb or forearm differences. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 18/09/2026

Dowling-Degos Disease is a rare genetic skin disorder causing progressive dark, net-like patches in body folds, driven by mutations that disrupt normal melanosome trafficking. Learn more: dub.sh/UpsAjsU You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Dowling-Degos Disease, a rare genetic skin disorder causing progressive reticulated dark patches in body folds such as the armpits, groin, and neck. The card notes it stems from mutations disrupting melanosome trafficking, most often in the KRT5 gene. Key symptoms include net-like hyperpigmentation and occasional itching. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 17/09/2026

Andersen-Tawil Syndrome (ATS) combines episodic muscle paralysis, dangerous heart arrhythmias, and distinctive facial features, caused mainly by mutations in the KCNJ2 potassium channel gene. Learn more: dub.sh/ATS1 You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Andersen-Tawil Syndrome (ATS), a rare potassium-channel disorder estimated to affect about one in one million people. The card notes it is caused mainly by KCNJ2 gene mutations and combines episodic muscle paralysis with heart-rhythm abnormalities. Key symptoms include muscle weakness, a prolonged QT interval, and distinctive facial features. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 16/09/2026

Crimean-Congo Hemorrhagic Fever (CCHF) is a tick-borne viral illness that can progress from flu-like symptoms to severe bleeding, shock, & organ failure, with outbreak fatality rates up to 30% Learn more: dub.sh/CCHF You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Crimean-Congo Hemorrhagic Fever (CCHF), a tick-borne viral illness spread mainly by Hyalomma ticks and contact with infected livestock. The card notes an estimated 10,000 to 15,000 cases occur worldwide each year, with outbreak fatality rates typically ranging from 5 to 30 percent. Key symptoms include sudden fever, severe headache, and, in severe cases, uncontrolled bleeding. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 15/09/2026

Idiopathic Pulmonary Hemosiderosis (IPH) causes recurrent, unexplained bleeding in the lungs, mostly in kids under 10, leading to iron-deficiency anemia and possible lung scarring. Learn more: dub.sh/IPH1 You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Idiopathic Pulmonary Hemosiderosis (IPH), a rare lung disease causing recurrent, unexplained bleeding into the alveoli, mostly in children under 10. The card notes that pediatric incidence is estimated at under 1.3 cases per million and up to a quarter of adult patients also have celiac disease. Key symptoms include coughing up blood, shortness of breath, and iron-deficiency anemia. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 14/09/2026

Caroli Disease is a rare congenital disorder where bile ducts inside the liver become abnormally widened, leading to recurrent infections and stone formation. Learn more: www.malacards.org/card/caroli_disea… You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Caroli Disease, a rare congenital disorder in which bile ducts inside the liver become abnormally widened and prone to infection. The card notes simple Caroli disease affects about 1 in 1,000,000 people and causes abdominal pain, fever, and jaundice. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 13/09/2026

Acrodermatitis Enteropathica is a rare inherited disorder that blocks zinc absorption, causing a distinctive skin rash, chronic diarrhea, and hair loss in infants. Learn more: dub.sh/acr-ent You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Acrodermatitis Enteropathica, a rare inherited disorder that prevents the body from absorbing zinc properly. The card notes it occurs in about 1 in 500,000 births and causes a horseshoe-shaped skin rash, chronic diarrhea, and hair loss, especially around weaning. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 12/09/2026

DIPNECH is a rare lung condition where hormone-releasing cells overgrow in the small airways, causing chronic cough and wheezing often mistaken for asthma. Learn more: dub.sh/dipnech You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia, or DIPNECH, a rare precancerous lung condition mostly affecting middle-aged women. The card notes it causes chronic cough, shortness of breath, and wheezing often mistaken for asthma or COPD. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 11/09/2026

Membranoproliferative Glomerulonephritis (MPGN) is a rare kidney disease where immune complexes or complement dysregulation damage the kidney's filtering units, can lead to kidney failure. Learn more: dub.sh/MPGN You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Membranoproliferative Glomerulonephritis, a rare kidney disorder in which immune complexes or complement system dysregulation damage the kidney's filtering units. The card notes primary MPGN affects about 1 to 2 people per million and can cause foamy urine, swelling, and high blood pressure. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 10/09/2026

Chagas Disease is a parasitic infection spread by kissing bugs that can silently damage the heart and digestive tract over decades if left untreated. Considered rare in US/Europe, not worldwide. Learn more: chagasfound.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Chagas Disease, a parasitic infection caused by Trypanosoma cruzi and spread mainly by triatomine kissing bugs. The card notes that it is considered rare in the US and Europe, but not worldwide. it affects about 8 million people worldwide and can lead to serious heart and digestive complications if untreated. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 09/09/2026

Choroideremia is a rare inherited eye disease that slowly destroys the retina, mostly in males, causing childhood night blindness that progresses toward legal blindness over time. Learn more: curechm.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Choroideremia, a rare inherited eye disease that gradually destroys the retina and underlying choroid, almost always in males. The card notes it affects about 1 in 50,000 people and causes night blindness, progressive tunnel vision, and eventual legal blindness. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 08/09/2026

Left Ventricular Noncompaction Cardiomyopathy (LVNC) is a rare heart disorder causing a spongy, grooved heart wall that raises the risk of heart failure and dangerous arrhythmias. Learn more: dub.sh/LVNC You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Left Ventricular Noncompaction Cardiomyopathy (LVNC), a rare heart disorder in which the lower left heart chamber develops a spongy, deeply grooved wall instead of smooth muscle. The card notes it affects roughly 0.014 to 0.26 percent of people and can cause heart failure, palpitations, and fainting. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 07/09/2026

Sjögren's Syndrome is a rare autoimmune disease attacking moisture-producing glands, causing chronic dry mouth and dry eyes, with possible joint, skin, and organ involvement. Learn more: sjogrens.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Sjögren's Syndrome, a rare autoimmune disease attacking the moisture-producing glands. The card notes it affects 1 to 4 million Americans, mostly women, causing chronic dry eyes and dry mouth. Key symptoms include joint pain, fatigue, and brain fog. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 06/09/2026

Friedreich Ataxia is a rare inherited disease from a GAA repeat expansion in the FXN gene, causing progressive loss of coordination, muscle weakness, and heart problems. Learn more: www.curefa.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Friedreich Ataxia, a rare inherited neurodegenerative disease. The card notes it affects about 1 in 29,000 to 50,000 people and results from a GAA repeat expansion in the FXN gene. Key symptoms include loss of coordination, slurred speech, and heart problems. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 05/09/2026

Prader-Willi Syndrome is a rare genetic imprinting disorder causing infant hypotonia followed by insatiable hunger, developmental delay, and endocrine problems in children. Learn more: www.pwsausa.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Prader-Willi Syndrome, a rare genetic imprinting disorder affecting chromosome 15. The card notes it affects about 1 in 15,000 to 30,000 births and causes infant hypotonia followed by insatiable hunger. Key features include short stature, developmental delay, and behavioral challenges. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 04/09/2026

Guillain-Barré Syndrome is a rare autoimmune disorder where the immune system attacks peripheral nerves after infection, causing rapidly progressive weakness that can lead to paralysis. Learn more: www.gbs-cidp.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Guillain-Barré Syndrome, a rare autoimmune disorder attacking the peripheral nerves. The card notes it affects about 100,000 people worldwide yearly, often triggered by prior infection. Key symptoms include ascending weakness, loss of reflexes, and breathing difficulty. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 03/09/2026

Marfan Syndrome is a genetic connective tissue disorder from FBN1 mutations, affecting the skeleton, eyes, and heart, most seriously by weakening and enlarging the aorta over time. Learn more: marfan.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Marfan Syndrome, a rare genetic disorder affecting connective tissue throughout the body. The card notes it affects roughly 1 in 3,000 to 5,000 people and stems from FBN1 gene mutations. Key features include tall stature, long limbs, dislocated eye lenses, and risk of aortic aneurysm. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 02/09/2026

Achalasia is a rare esophageal disorder where nerve degeneration stops the swallowing muscles from working, trapping food above the stomach and causing progressive trouble swallowing. Learn more: achalasiaawareness.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Achalasia, a rare esophageal motility disorder. The card notes it's diagnosed in about 1 in 100,000 people yearly and results from nerve degeneration that stops the lower esophageal sphincter from relaxing. Key symptoms include difficulty swallowing, regurgitation, and chest pain. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 01/09/2026

Chronic Recurrent Multifocal Osteomyelitis (CRMO) is a rare autoinflammatory disease causing sterile bone lesions in children, most often girls, starting around age 9 to 10. Learn more: crmofoundation.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Chronic Recurrent Multifocal Osteomyelitis (CRMO), a rare autoinflammatory bone disease. The card notes CRMO affects about 1 in million people and mainly strikes children around age 9 to 10, with girls affected five times more often than boys. Key symptoms include deep bone pain, swelling, and clavicle involvement. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 31/08/2026

SHORT Syndrome is a rare genetic disorder caused by PIK3R1 mutations, causing short stature, deep-set eyes, dental delays, and insulin resistance. Learn more: www.malacards.org/card/short_syndro… You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for SHORT Syndrome, a rare genetic disorder caused by PIK3R1 gene mutations affecting growth and metabolism. The card notes its name reflects short stature, deep-set eyes, and teething delay, and lists insulin resistance among key risks. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 30/08/2026

Fraser Syndrome is a rare genetic disorder causing eyes covered by skin, fused fingers, and absent kidneys due to a disrupted developmental protein complex. Learn more: dub.sh/fraser You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Fraser Syndrome, a rare genetic disorder causing multiple congenital malformations present at birth. The card notes it affects about 1 in 200,000 newborns and lists cryptophthalmos and fused fingers among key symptoms. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 29/08/2026

Norrie Disease is a rare X-linked disorder causing blindness at birth from retinal degeneration, often with progressive hearing loss and developmental delays. Learn more: www.norriedisease.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Norrie Disease, a rare X-linked genetic disorder that causes blindness at birth due to retinal degeneration. The card notes it often includes progressive hearing loss and developmental delays, and lists leukocoria among key symptoms. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 28/08/2026

Incontinentia Pigmenti is a rare X-linked disorder causing swirled skin lesions from birth, along with dental, eye, and neurological abnormalities, mainly affecting females. Learn more: dub.sh/4m6c8xz You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Incontinentia Pigmenti, a rare genetic disorder affecting the skin, teeth, eyes, and nervous system, mainly in females. The card notes distinctive four-stage skin lesions and lists seizures and vision loss among possible complications. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 27/08/2026

Loeffler Endocarditis is a rare eosinophil-mediated restrictive cardiomyopathy in which excess eosinophils infiltrate and damage the heart, stiffening it and impairing blood flow. Learn more: apfed.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Loeffler Endocarditis, a rare eosinophil-mediated heart condition that stiffens the heart muscle and impairs its ability to fill with blood. The card notes it affects about half of hypereosinophilic syndrome patients and lists shortness of breath and fatigue among key symptoms. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 26/08/2026

Post-Polio Syndrome is a delayed neuromuscular condition affecting polio survivors, emerging decades after recovery and causing new, progressive muscle weakness, pain, and severe fatigue. Learn more: post-polio.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Post-Polio Syndrome, a rare delayed condition affecting polio survivors decades after their original infection. The card notes it may affect up to half of the 300,000 polio survivors in the U.S. and lists progressive muscle weakness and fatigue among key symptoms. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 25/08/2026

Ménétrier Disease is a rare gastric disorder causing severe thickening of the stomach lining, driven by excess EGFR signaling, chronic protein loss, and elevated gastric cancer risk. Learn more: dub.sh/menetrier You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Ménétrier Disease, a rare gastric disorder in which overgrowth of the stomach lining causes chronic protein loss. The card notes it affects fewer than 1,000 people worldwide and lists epigastric pain and fatigue among key symptoms. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 24/08/2026

Cystinuria is a rare inherited disorder from SLC3A1 or SLC7A9 gene mutations that causes recurrent cystine kidney stones, affecting roughly 1 in 7,000 people. Learn more: cystinuria.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Cystinuria, a rare inherited disorder caused by mutations in SLC3A1 or SLC7A9 genes that impair cystine reabsorption in the kidneys. The card notes it causes recurrent, painful cystine kidney stones and affects roughly 1 in 7,000 people, with hydration and urine alkalinization as first-line treatment. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 23/08/2026

Swyer-James-MacLeod Syndrome is a rare lung condition from childhood bronchiolitis obliterans, leaving one lung smaller, poorly ventilated, and hyperlucent on imaging. Learn more: dub.sh/swyer You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Swyer-James Syndrome, a rare acquired lung condition that develops after severe childhood bronchiolitis obliterans, often from adenovirus infection. The card notes it leaves one lung smaller and poorly ventilated, appearing abnormally dark on imaging, with symptoms ranging from none to chronic cough and recurrent infections. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 22/08/2026

Bardet-Biedl Syndrome is a rare ciliopathy causing retinal degeneration, early-onset obesity, extra fingers or toes, and kidney abnormalities from disrupted primary cilia function. Learn more: www.bardetbiedl.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Bardet-Biedl Syndrome, a rare genetic ciliopathy caused by mutations in one of 26 known genes. The card notes it causes retinal degeneration, early-onset obesity, extra fingers or toes, and kidney abnormalities, with setmelanotide as the first FDA-approved treatment for BBS-related obesity. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 21/08/2026

Best Disease (Vitelliform Macular Dystrophy) is an inherited retinal disorder from BEST1 gene mutations, causing a yolk-like macular lesion and gradual central vision loss. Learn more: dub.sh/Bestdis You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Best Disease, also called Best Vitelliform Macular Dystrophy, an inherited retinal disorder caused by BEST1 gene mutations. The card notes it produces a distinctive yolk-like macular lesion and gradually disrupts central vision starting in childhood, while side vision stays normal. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 20/08/2026

Lassa Fever is a viral hemorrhagic fever endemic to West Africa, spread by rodents and person-to-person contact. Roughly a third of survivors develop permanent hearing loss. Learn more: dub.sh/Lassa You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Lassa Fever, a viral hemorrhagic fever endemic to West Africa spread by contact with infected rodents or bodily fluids. The card notes it causes an estimated 100,000 to 300,000 infections yearly, and that roughly one-third of survivors develop permanent hearing loss. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 19/08/2026

Moebius Syndrome is a rare congenital disorder causing facial paralysis and inability to move the eyes side to side, from underdeveloped cranial nerves. Affects up to 1 in 50,000 newborns. Learn more: moebiussyndrome.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Moebius Syndrome, a rare congenital disorder caused by underdeveloped facial and abducens cranial nerves. The card notes it causes facial paralysis and inability to move the eyes side to side from birth, affecting an estimated 1 in 50,000 to 500,000 newborns. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 18/08/2026

Wolfram Syndrome (DIDMOAD) is an ultra-rare genetic disorder causing childhood diabetes, progressive optic atrophy, hearing loss, and neurodegeneration. Affects roughly 1 in 700,000 people. Learn more: thesnowfoundation.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Wolfram Syndrome, an ultra-rare genetic disorder also called DIDMOAD, caused by mutations in the WFS1 gene. The card notes it affects about 1 in 500,000 to 770,000 people and causes childhood-onset diabetes, progressive optic atrophy, and hearing loss, with no cure currently available. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 17/08/2026

Alpha Thalassemia is an inherited blood disorder caused by deletions or mutations in the HBA1 and HBA2 genes, which reduce production of alpha-globin, a key building block of hemoglobin. Learn more: thalassemia.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Alpha Thalassemia, an inherited blood disorder caused by mutations in the HBA1 and HBA2 genes that reduce hemoglobin production. The card notes it occurs in about 1 in 10,000 births and ranges in severity from silent carrier status to hemoglobin H disease. Key symptoms include fatigue, pallor, and an enlarged spleen. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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CT Rare Advocate @rarectadvocate.com · 16/08/2026

Q Fever is a zoonotic infection caused by the bacterium Coxiella burnetii, spread to humans mainly through inhaling contaminated dust from infected livestock such as cattle, sheep, and goats Learn more: dub.sh/Qfever You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

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CT Rare Advocate @rarectadvocate.com · 15/08/2026

Idiopathic Pulmonary Fibrosis is a chronic, progressive lung disease in which tissue deep in the lungs becomes thickened, stiff, and scarred for reasons that remain unknown. Learn more: dub.sh/ipf1 You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Idiopathic Pulmonary Fibrosis, a chronic lung disease in which lung tissue becomes thickened and scarred for unknown reasons. The card notes it affects an estimated 2 to 29 people per 100,000 and most often develops after age 60. Key symptoms include shortness of breath, dry cough, and finger clubbing. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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