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@kingtiger.bsky.socialSep 30, 2026, 3:22 AM

bonk

KingTiger is playing Ballionaire! LIVE NOW on Twitch

twitch.tv/felineroyalt...

#smallstreamer #cats #neurodivergent #chill #mentalhealth #chronicillness #rarediseaseawareness

#FelineRoyalty #cozy #disabled #LGBTQIAPlus

@rarectadvocate.comSep 29, 2026, 2:00 PM

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: https://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"
@rarectadvocate.comSep 28, 2026, 10:21 PM

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: https://www.rarenewengland.org/

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

@rarectadvocate.comSep 28, 2026, 2:00 PM

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: https://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"
@rarectadvocate.comSep 27, 2026, 2:00 PM

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"
@rarectadvocate.comSep 26, 2026, 2:00 PM

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"
@kingtiger.bsky.socialSep 26, 2026, 3:58 AM

rest, repair, recover

KingTiger is playing ReStory: Chill Electronics Repair! LIVE NOW on Twitch

twitch.tv/felineroyalt...

#smallstreamer #cats #neurodivergent #chill #mentalhealth #chronicillness #rarediseaseawareness

#FelineRoyalty #cozy #disabled #LGBTQIAPlus

@citizenptnewsct.bsky.socialSep 25, 2026, 4:05 PM

Jackson Laboratory is revolutionizing clinician training with free AI-driven education modules and hands-on rare-disease experiences to enhance genomic diagnosis skills.

Click to read more!

#CT #CitizenPortal #AIInHealthcare #GenomicTraining #RareDiseaseAwareness

@rarectadvocate.comSep 25, 2026, 2:00 PM

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 https://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"
@rarectadvocate.comSep 24, 2026, 2:00 PM

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: https://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"
@kingtiger.bsky.socialSep 24, 2026, 3:05 AM

not horror, unless you hate puzzles

KingTiger is playing Strange Jigsaws! LIVE NOW on Twitch

twitch.tv/felineroyalt...

#smallstreamer #cats #neurodivergent #chill #mentalhealth #chronicillness #rarediseaseawareness

#FelineRoyalty #cozy #disabled #LGBTQIAPlus

@rarectadvocate.comSep 23, 2026, 2:00 PM

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"
@curegm1.bsky.socialSep 22, 2026, 8:00 PM

WE BLEW PAST OUR GOAL! 🚀💥 #DoItForGM1 soared past $15,000, fueling $600K ERT research for a GM1 cure! We're not stopping now. Keep sharing, connecting, and signing up! Help us crush the next milestone: https://givebutter.com/do-it-for-gm1-in-2026 💙 #RareDiseaseAwareness

Social media post image
@rarectadvocate.comSep 22, 2026, 2:00 PM

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"
@rarectadvocate.comSep 21, 2026, 2:00 PM

Zellweger Syndrome is the most severe peroxisomal biogenesis disorder, caused by PEX gene mutations that leave infants without functioning peroxisomes from birth.

Learn more: https://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"
@rarectadvocate.comSep 20, 2026, 2:00 PM

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: https://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"
@rarectadvocate.comSep 19, 2026, 2:00 PM

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: https://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"
@kingtiger.bsky.socialSep 19, 2026, 4:29 AM

triple threat

The whole fam is playing Ship Graveyard Sim 2!! LIVE NOW on Twitch w/ @queencheetah.bsky.social

twitch.tv/felineroyalt...

#smallstreamer #cats #neurodivergent #chill #mentalhealth #chronicillness #rarediseaseawareness

#FelineRoyalty #cozy #disabled #LGBTQIAPlus

@rarectadvocate.comSep 18, 2026, 2:00 PM

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: https://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"
@citizenptnewsor.bsky.socialSep 17, 2026, 6:45 PM

The debate is heating up as board members consider whether to eliminate the orphan-drug exemption entirely, sparking fierce discussions about drug affordability for rare-disease patients.

Get the details!

#OR #RareDiseaseAwareness #HealthcareAccess #PharmaceuticalRegulation

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