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
Imerslund-Gräsbeck Syndrome (IGS) is a rare inherited disorder in which the intestine cannot properly absorb vitamin B12, leading to vitamin B12 deficiency and megaloblastic anemia.
Learn more: metabolicsupportuk.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: metabolicsupportuk.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 12, 2026 at 3:05 PM
Imerslund-Gräsbeck Syndrome (IGS) is a rare inherited disorder in which the intestine cannot properly absorb vitamin B12, leading to vitamin B12 deficiency and megaloblastic anemia.
Learn more: metabolicsupportuk.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: metabolicsupportuk.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Weill-Marchesani Syndrome (WMS) is a rare connective tissue disorder marked by short stature, joint stiffness, and unique eye issues.
Learn more: dub.sh/ZMsThe6
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dub.sh/ZMsThe6
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 11, 2026 at 3:05 PM
Weill-Marchesani Syndrome (WMS) is a rare connective tissue disorder marked by short stature, joint stiffness, and unique eye issues.
Learn more: dub.sh/ZMsThe6
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dub.sh/ZMsThe6
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Vogt-Koyanagi-Harada (VKH) disease is a rare, presumed autoimmune, multisystem disorder that primarily causes bilateral inflammation inside the eyes and can involve the ears, skin, & nervous system
Learn more autoimmune.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more autoimmune.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 10, 2026 at 3:05 PM
Vogt-Koyanagi-Harada (VKH) disease is a rare, presumed autoimmune, multisystem disorder that primarily causes bilateral inflammation inside the eyes and can involve the ears, skin, & nervous system
Learn more autoimmune.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more autoimmune.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
X-Linked Lymphoproliferative (XLP) syndrome is an extremely rare inherited primary immunodeficiency in which the immune system reacts abnormally, especially to Epstein–Barr virus infection
Learn more www.xlpresearchtrust.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more www.xlpresearchtrust.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 9, 2026 at 3:03 PM
X-Linked Lymphoproliferative (XLP) syndrome is an extremely rare inherited primary immunodeficiency in which the immune system reacts abnormally, especially to Epstein–Barr virus infection
Learn more www.xlpresearchtrust.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more www.xlpresearchtrust.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Kallmann Syndrome is a rare genetic disorder characterized by absent or delayed puberty together with a reduced or absent sense of smell due to congenital gonadotropin‑releasing hormone deficiency.
Learn more: dub.sh/KFt4Id2
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dub.sh/KFt4Id2
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 8, 2026 at 3:02 PM
Kallmann Syndrome is a rare genetic disorder characterized by absent or delayed puberty together with a reduced or absent sense of smell due to congenital gonadotropin‑releasing hormone deficiency.
Learn more: dub.sh/KFt4Id2
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dub.sh/KFt4Id2
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Oculocutaneous Albinism (OCA) is a group of rare inherited disorders characterized by reduced or absent melanin pigment in the skin, hair, and eyes, leading to lifelong skin and vision differences.
Learn more: albinism.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: albinism.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 7, 2026 at 3:02 PM
Oculocutaneous Albinism (OCA) is a group of rare inherited disorders characterized by reduced or absent melanin pigment in the skin, hair, and eyes, leading to lifelong skin and vision differences.
Learn more: albinism.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: albinism.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Multiminicore Disease, also known as Multi-minicoremyopathy (MmD is a
rare congenital myopathy characterized by multiple small, disorganized areas (minicores) in muscle fibers.
Learn more: dub.sh/XJPIwSB
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
rare congenital myopathy characterized by multiple small, disorganized areas (minicores) in muscle fibers.
Learn more: dub.sh/XJPIwSB
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 6, 2026 at 3:03 PM
Multiminicore Disease, also known as Multi-minicoremyopathy (MmD is a
rare congenital myopathy characterized by multiple small, disorganized areas (minicores) in muscle fibers.
Learn more: dub.sh/XJPIwSB
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
rare congenital myopathy characterized by multiple small, disorganized areas (minicores) in muscle fibers.
Learn more: dub.sh/XJPIwSB
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Autosomal Recessive Centronuclear Myopathy (AR-CNM) is a very rare inherited neuromuscular disease characterized by centrally placed nuclei in muscle fibers.
Learn more: myotubulartrust.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: myotubulartrust.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 5, 2026 at 3:02 PM
Autosomal Recessive Centronuclear Myopathy (AR-CNM) is a very rare inherited neuromuscular disease characterized by centrally placed nuclei in muscle fibers.
Learn more: myotubulartrust.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: myotubulartrust.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Benign Samaritan congenital myopathy is a rare inherited skeletal muscle disorder that presents in newborns with severe muscle weakness, low muscle tone, and breathing difficulties.
Learn more: dub.sh/FWipyrZ
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dub.sh/FWipyrZ
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 4, 2026 at 3:03 PM
Benign Samaritan congenital myopathy is a rare inherited skeletal muscle disorder that presents in newborns with severe muscle weakness, low muscle tone, and breathing difficulties.
Learn more: dub.sh/FWipyrZ
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dub.sh/FWipyrZ
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Costello syndrome is a rare genetic disorder affecting multiple organ systems, include the heart, skin, skeleton and nervous system, due to HRAS gene mutations.
Learn more: dub.sh/za5xON8
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dub.sh/za5xON8
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 3, 2026 at 3:03 PM
Costello syndrome is a rare genetic disorder affecting multiple organ systems, include the heart, skin, skeleton and nervous system, due to HRAS gene mutations.
Learn more: dub.sh/za5xON8
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dub.sh/za5xON8
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Central core disease (CCD) is a rare congenital myopathy affecting skeletal muscles, often causing weakness from infancy or early childhood due to RYR1 gene mutations.
Learn more: ryr1.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: ryr1.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 2, 2026 at 3:03 PM
Central core disease (CCD) is a rare congenital myopathy affecting skeletal muscles, often causing weakness from infancy or early childhood due to RYR1 gene mutations.
Learn more: ryr1.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: ryr1.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Malignant hyperthermia is a rare genetic disorder where certain anesthesia drugs cause a dangerous reaction, leading to high body temperature, muscle stiffness, and heart issues.
Learn more: www.mhaus.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.mhaus.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
February 1, 2026 at 3:02 PM
Malignant hyperthermia is a rare genetic disorder where certain anesthesia drugs cause a dangerous reaction, leading to high body temperature, muscle stiffness, and heart issues.
Learn more: www.mhaus.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.mhaus.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Holoprosencephaly (HPE) is a brain malformation where the embryonic forebrain doesn't divide into hemispheres, resulting in a single-lobed brain and facial abnormalities.
Learn more: familiesforhope.org
Learn more: You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: familiesforhope.org
Learn more: You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 31, 2026 at 3:01 PM
Holoprosencephaly (HPE) is a brain malformation where the embryonic forebrain doesn't divide into hemispheres, resulting in a single-lobed brain and facial abnormalities.
Learn more: familiesforhope.org
Learn more: You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: familiesforhope.org
Learn more: You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Smith-Lemli-Opitz syndrome (SLOS) is a rare inherited developmental disorder caused by a defect in cholesterol synthesis.
Learn more: www.smithlemliopitz.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.smithlemliopitz.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 30, 2026 at 3:03 PM
Smith-Lemli-Opitz syndrome (SLOS) is a rare inherited developmental disorder caused by a defect in cholesterol synthesis.
Learn more: www.smithlemliopitz.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.smithlemliopitz.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Congenital Myasthenic Syndrome type 3A (CHRNE-related CMS) is a rare inherited disorder causing muscle weakness due to acetylcholine receptor issues at the neuromuscular junction.
Learn more: myasthenia.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: myasthenia.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 29, 2026 at 3:03 PM
Congenital Myasthenic Syndrome type 3A (CHRNE-related CMS) is a rare inherited disorder causing muscle weakness due to acetylcholine receptor issues at the neuromuscular junction.
Learn more: myasthenia.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: myasthenia.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Harlequin ichthyosis is a severe genetic skin disorder in which newborns are born with very thick, plate-like scales that tighten the skin and distort facial features.
Learn more: www.firstskinfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.firstskinfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 28, 2026 at 3:04 PM
Harlequin ichthyosis is a severe genetic skin disorder in which newborns are born with very thick, plate-like scales that tighten the skin and distort facial features.
Learn more: www.firstskinfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.firstskinfoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
X-Linked Retinoschisis (XLRS) is a rare inherited retinal disorder, primarily affecting males, in which splitting of the retinal layers causes early-onset impaired central vision.
Learn more: www.fightingblindness.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.fightingblindness.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 27, 2026 at 3:04 PM
X-Linked Retinoschisis (XLRS) is a rare inherited retinal disorder, primarily affecting males, in which splitting of the retinal layers causes early-onset impaired central vision.
Learn more: www.fightingblindness.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: www.fightingblindness.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Primary Cardiac Angiosarcoma is a rare, highly aggressive cancer that arises from the endothelial cells lining the blood vessels of the heart, most often in the right atrium.
Learn more: curesarcoma.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: curesarcoma.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 26, 2026 at 3:03 PM
Primary Cardiac Angiosarcoma is a rare, highly aggressive cancer that arises from the endothelial cells lining the blood vessels of the heart, most often in the right atrium.
Learn more: curesarcoma.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: curesarcoma.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Primary Familial Brain Calcification (PFBC) is a rare, inherited disorder marked by abnormal calcium deposits in the brain's small blood vessels and tissues, particularly in the basal ganglia.
Learn more: dub.sh/PFBC
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dub.sh/PFBC
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 25, 2026 at 3:01 PM
Primary Familial Brain Calcification (PFBC) is a rare, inherited disorder marked by abnormal calcium deposits in the brain's small blood vessels and tissues, particularly in the basal ganglia.
Learn more: dub.sh/PFBC
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: dub.sh/PFBC
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Autosomal Dominant Polycystic Liver Disease (ADPLD) is a genetic disorder characterized by numerous fluid-filled cysts confined primarily to the liver, often with normal kidney structure and function.
Learn more dub.sh/ADPLD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more dub.sh/ADPLD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 24, 2026 at 3:03 PM
Autosomal Dominant Polycystic Liver Disease (ADPLD) is a genetic disorder characterized by numerous fluid-filled cysts confined primarily to the liver, often with normal kidney structure and function.
Learn more dub.sh/ADPLD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more dub.sh/ADPLD
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Eosinophilic Fasciitis (Shulman Disease) is a rare fibrosing connective tissue disorder characterized by inflammation and thickening of the fascia beneath the skin.
Learn more: apfed.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: apfed.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 23, 2026 at 3:04 PM
Eosinophilic Fasciitis (Shulman Disease) is a rare fibrosing connective tissue disorder characterized by inflammation and thickening of the fascia beneath the skin.
Learn more: apfed.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: apfed.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Familial Partial Lipodystrophy (FPLD) is a rare inherited disorder in which there is selective loss of subcutaneous fat from specific body regions with relative fat accumulation in others.
Learn more: lipodystrophyunited.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: lipodystrophyunited.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 22, 2026 at 3:03 PM
Familial Partial Lipodystrophy (FPLD) is a rare inherited disorder in which there is selective loss of subcutaneous fat from specific body regions with relative fat accumulation in others.
Learn more: lipodystrophyunited.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: lipodystrophyunited.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Autosomal Dominant Leukodystrophy (ADLD), also called LMNB1‑related ADLD, is a rare inherited leukodystrophy that causes slowly progressive damage to the white matter of the brain and spinal cord.
Learn more: adld.center
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: adld.center
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 21, 2026 at 3:05 PM
Autosomal Dominant Leukodystrophy (ADLD), also called LMNB1‑related ADLD, is a rare inherited leukodystrophy that causes slowly progressive damage to the white matter of the brain and spinal cord.
Learn more: adld.center
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: adld.center
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Aicardi-Goutieres Syndrome (AGS) is a very rare inherited leukodystrophy in which an abnormal immune response damages the brain’s white matter.
Learn more: agsaa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: agsaa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 20, 2026 at 3:03 PM
Aicardi-Goutieres Syndrome (AGS) is a very rare inherited leukodystrophy in which an abnormal immune response damages the brain’s white matter.
Learn more: agsaa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more: agsaa.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Vein of Galen malformation (VOGM) is a rare congenital arteriovenous malformation in which abnormal arteries connect directly to the deep midline vein of Galen in the brain, creating a high‑flow shunt
Learn more dub.sh/VOGM
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more dub.sh/VOGM
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
January 19, 2026 at 3:02 PM
Vein of Galen malformation (VOGM) is a rare congenital arteriovenous malformation in which abnormal arteries connect directly to the deep midline vein of Galen in the brain, creating a high‑flow shunt
Learn more dub.sh/VOGM
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Learn more dub.sh/VOGM
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness