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CT Rare Advocate @rarectadvocate.com · 21h

Polycythemia vera is a rare chronic blood cancer characterized by the
overproduction of red blood cells in the bone marrow, leading to
increased blood thickness and a higher risk of blood clots.

Learn more buff.ly/7sQgzHs

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#rareDisease #rareDiseaseAwareness

CT Rare Advocate @rarectadvocate.com · 1d

Ewing Sarcoma is a rare and aggressive cancer that typically begins in bones or nearby soft tissue, mostly affecting children, adolescents, and young adults.

Learn more: www.thecharlielandersfoundation.org

You may be rare, but you're not alone!
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CT Rare Advocate @rarectadvocate.com · 2d

Hereditary Hemorrhagic Telangiectasia (HHT), aka Osler-Weber-Rendu syndrome, is a genetic disorder characterized by abnormal and fragile blood vessels that are prone to bleeding across various organs.

Learn more curehht.org

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CT Rare Advocate @rarectadvocate.com · 3d

Rare Disease Mental Health info:

Global genes: buff.ly/vt4unCG
Rare Advocacy Movement: buff.ly/6RT5t4D
Center for Chronic Illness: buff.ly/Bc2q1Mu
Rareminds: buff.ly/10BI9Ij
National Alliance on Mental Illness: www.nami.org
Parent to Parent: buff.ly/OoDChb1
Give an Hour: buff.ly/KbyW8gn

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CT Rare Advocate @rarectadvocate.com · 3d

Taking care of mental health is just as essential as managing physical
health. If you’re affected by a rare disease, remember: seeking mental
health treatment is a sign of strength, not weakness. Reach out—help is
available, and you don’t have to go it alone. 🧠🦓 💙 #rareDiseaseAwareness

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CT Rare Advocate @rarectadvocate.com · 3d

10/10 is World Mental Health Day

Rare Disease patients & their caregivers face immense challenges: Diagnosis, Symptom management & treatment, and often isolation takes a heavy toll on mental health. 🧠🦓 💙

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

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CT Rare Advocate @rarectadvocate.com · 3d

Alagille Syndrome is a rare genetic disorder affecting the liver, heart, and other major organ systems, typically caused by mutations impacting bile duct development and various tissues.

Learn more: alagille.org

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

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CT Rare Advocate @rarectadvocate.com · 4d

Familial Adenomatous Polyposis (FAP) is a rare inherited disorder in which polyps form in the colon and rectum, greatly increasing the risk of colorectal cancer if left untreated.

Learn more: polyposispatient.support

You may be rare, but you're not alone!
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CT Rare Advocate @rarectadvocate.com · 5d

Li-Fraumeni syndrome (LFS) is a rare, inherited genetic disorder that greatly increases the risk for a wide range of cancers, often starting in childhood or early adulthood.

Learn more: www.lfsassociation.org

You may be rare, but you're not alone!
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CT Rare Advocate @rarectadvocate.com · 6d

Follicular lymphoma (FL) is a slow-growing, indolent type of non-Hodgkin lymphoma that arises from B-cells in the lymphatic system and often presents as painless swollen lymph nodes.

Learn more: www.theflf.org

You may be rare, but you're not alone!
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CT Rare Advocate @rarectadvocate.com · 7d

Joubert Syndrome 1 (JBTS1) is a rare genetic disorder characterized by abnormal development of the brain, particularly the cerebellar vermis and brain stem and multisystem involvement.

Learn more: jsrdf.org

You may be rare, but you're not alone!
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CT Rare Advocate @rarectadvocate.com · 8d

Stargardt Disease 1 (STGD1) is a rare inherited retinal disorder characterized by progressive loss of central vision, due to the accumulation of fatty material on the macula.

Learn more: www.fightingblindness.org

You may be rare, but you're not alone!
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CT Rare Advocate @rarectadvocate.com · 9d

CHARGE syndrome is a rare genetic disorder involving congenital malformations and sensory deficits across multiple organ systems, often linked to CHD7 gene mutations.

Learn more: www.chargesyndrome.org

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

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CT Rare Advocate @rarectadvocate.com · 10d

Cowden Syndrome is a rare inherited disorder characterized by multiple noncancerous growths (hamartomas) and a high risk of certain cancers, especially in the breast, thyroid, and uterus.

Learn more: ptenfoundation.org

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CT Rare Advocate @rarectadvocate.com · 11d

Behçet's Disease is a rare, chronic, multisystem inflammatory disorder characterized primarily by recurring mouth and genital ulcers, & other systemic symptoms due to inflammation of blood vessels

Learn more: www.behcets.com

You may be rare, but you're not alone!
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CT Rare Advocate @rarectadvocate.com · 12d

Subacute Sclerosing Panencephalitis (SSPE) is a rare, progressive, fatal brain disorder from a persistent measles virus infection, usually occurring years after the initial measles infection.

Learn more www.encephalitis.info

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CT Rare Advocate @rarectadvocate.com · 13d

September 30, 2025 is Rare Cancer Day, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face.

Learn more: rarediseases.org/get-involved... @nordrare.bsky.social

You may be rare, but you're not alone!
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CT Rare Advocate @rarectadvocate.com · 13d

Craniopharyngioma is a rare, benign, and slow-growing brain tumor that develops near the pituitary gland and hypothalamus, often affecting hormonal and vision pathways.

Learn more: www.rawoodfoundation.org

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

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CT Rare Advocate @rarectadvocate.com · 14d

Retinitis Pigmentosa (RP) is a group of rare, inherited eye disorders that cause progressive vision loss due to degeneration of the retina in the back of the eye.

Learn more: www.fightingblindness.org

You may be rare, but you're not alone!
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CT Rare Advocate @rarectadvocate.com · 15d

Aarskog (Aarskog-Scott) syndrome, is a rare genetic disorder affecting the development of the face, skeletal system, genitals, hands, and feet, with notable facial and limb abnormalities.

Learn more: buff.ly/jp2xWCE

You may be rare, but you're not alone!
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CT Rare Advocate @rarectadvocate.com · 16d

Naegleria fowleri infection, known as primary amebic meningoencephalitis (PAM), is a rapidly fatal brain infection caused by a free-living amoeba found in warm freshwater.

Learn more: www.cdc.gov/naegleria/ab...

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CT Rare Advocate @rarectadvocate.com · 17d

Mesothelioma is a rare, aggressive cancer that develops in the thin tissue (mesothelium) lining the lungs, chest wall, abdomen, or heart.

Learn more: www.mesotheliomahope.com

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

CT Rare Advocate @rarectadvocate.com · 18d

Erdheim-Chester Disease (ECD) is a rare histiocytic neoplasm marked by the excessive production and buildup of histiocytes, causing inflammation and fibrosis that harm affected areas.

Learn more: www.erdheim-chester.org

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

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CT Rare Advocate @rarectadvocate.com · 19d

Atypical Hemolytic Uremic Syndrome (aHUS) is a rare genetic disorder causing abnormal blood clots in small blood vessels, mainly affecting the kidneys and leading to organ damage.

Sept 24 is aHUS awareness day: ahus.org

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

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CT Rare Advocate @rarectadvocate.com · 20d

Hereditary Sensory and Autonomic Neuropathy type IV (HSAN IV) is a rare genetic disorder where individuals cannot feel pain or temperature and cannot sweat due to impaired nerve cell function.

Learn more: hsaniv.org

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

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