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@rarectadvocate.comOct 17, 2026, 3:24 PM

Live at RareNE Annual Conference.

Learn more: www.rarenewengland.org

You may be rare, but you're not alone!
#RareDisease #RareDiseaseAwareness

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@rarectadvocate.comOct 17, 2026, 2:00 PM

Short QT Syndrome (SQTS) is a rare inherited heart rhythm disorder in which the heart recharges too fast between beats, raising the risk of sudden cardiac arrest in young people.

Learn more: https://www.fiacardiac.org/

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

Info card for Short QT Syndrome (SQTS), a rare inherited heart rhythm disorder in which the heart's electrical system recharges too quickly between beats. The card notes that SQTS affects fewer than 1 in 10,000 people and that about 40% of people with symptoms have had a cardiac arrest by age 40. Key symptoms include palpitations, fainting, and sudden cardiac arrest. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@rarectadvocate.comOct 16, 2026, 2:00 PM

Recurrent Respiratory Papillomatosis (RRP) is a rare HPV-driven disease that causes growths in the airway to keep returning, often requiring dozens of surgeries over a lifetime.

Learn more: https://rrpf.org

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

Info card for Recurrent Respiratory Papillomatosis (RRP), a rare disease in which HPV causes benign, wart-like growths to keep returning in the airway, most often on the vocal cords. The card notes that HPV types 6 and 11 cause more than 90% of cases and that the FDA approved Papzimeos in 2025 as the first therapy for adults with RRP. Key symptoms include hoarseness and noisy breathing. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@pscsupport.bsky.socialOct 16, 2026, 8:30 AM

Because PSC is a rare, often invisible, autoimmune liver disease, explaining it to friends, family, or colleagues can feel exhausting. We want to make those conversations easier. Learn more ➡️ buff.ly/hUKnRTq
#PSCSupport #PrimarySclerosingCholangitis #ExplainPSC #RareDiseaseAwareness #LetsBeatPSC

@rarectadvocate.comOct 15, 2026, 2:00 PM

Babesiosis is a malaria-like tick-borne infection in which Babesia parasites destroy red blood cells. Connecticut is a hotspot, and it can be severe for people without a spleen.

Learn more: https://dub.sh/GLA1

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

Info card for Babesiosis, a tick-borne infection in which microscopic Babesia parasites invade and destroy red blood cells. The card notes that the CDC reported 3,586 U.S. cases in 2023 and that Connecticut is a hotspot. Key symptoms include fever, chills, fatigue, and hemolytic anemia. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@rarectadvocate.comOct 14, 2026, 2:00 PM

Bethlem Myopathy 1A is a rare inherited muscle disease caused by COL6A1 gene changes, leading to slowly progressive weakness, tight joints, and skin changes such as keloid scars.

Learn more: curecmd.org

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

Info card for Bethlem Myopathy 1A, a rare inherited muscle disease caused by changes in the COL6A1 gene, which helps build collagen VI. The card notes that it is the mildest form of collagen VI-related muscular dystrophy and that most people over 50 can still walk independently indoors. Key symptoms include slowly progressive weakness, joint contractures, and keloid scars. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@uniquecharity.bsky.socialOct 14, 2026, 10:00 AM

We stopped asking the public to understand.

Learn more about our Low-key Kind campaign in the latest edition of Rare Revolution Magazine
https://bit.ly/RARE-X-Linked-Unique

#RareRevolution #LowKeyKind #LowKey #PublicAwareness #RareDiseaseAwareness

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@angioedemanews.bsky.socialOct 13, 2026, 2:06 PM

#HereditaryAngioedema #HAE #HAEAwareness #HAEAttacks #HAECommunity #RareDisease #RareDiseaseAwareness #ChronicIllness #ChronicIllnessCommunity #PatientAdvocacy #PatientVoices #TreatmentAdherence #BioNews #AngioedemaNews

@rarectadvocate.comOct 13, 2026, 2:00 PM

Schimke Immuno-Osseous Dysplasia (SIOD) is a rare inherited disorder causing short stature, progressive kidney failure, a weakened immune system, & strokes, due to changes in the SMARCAL1 gene

Learn more: https://dub.sh/SIOD

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

Info card for Schimke Immuno-Osseous Dysplasia (SIOD), a rare inherited disorder affecting the bones, kidneys, and immune system. The card notes that it is caused by variants in the SMARCAL1 gene, occurs in about 1 in 1 million to 3 million births, and that nearly all patients develop kidney disease. Key symptoms include disproportionate short stature, frequent infections, and strokes. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@rarectadvocate.comOct 12, 2026, 2:00 PM

Perlman Syndrome is a very rare inherited overgrowth disorder causing large birth size and enlarged kidneys, with high newborn mortality and a strong risk of Wilms tumor, a kidney cancer.

Learn more: https://dub.sh/Perlman

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

Info card for Perlman Syndrome, a very rare inherited overgrowth disorder caused by variants in the DIS3L2 gene. The card notes that only about 30 cases have been reported, that more than half of affected babies die in the first month, and that most survivors develop Wilms tumor, a childhood kidney cancer. Key symptoms include large birth size, enlarged kidneys and other organs, and developmental delay. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@rarectadvocate.comOct 11, 2026, 2:00 PM

Lethal Multiple Pterygium Syndrome (LMPS) is a rare inherited condition where babies cannot move in the womb, causing skin webs across joints, severe contractures, and underdeveloped organs

Learn more https://amcsupport.org/

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

Info card for Lethal Multiple Pterygium Syndrome (LMPS), a rare inherited condition in which a developing baby cannot move normally in the womb because nerve signals fail to reach the muscles. The card notes that it can be caused by variants in the CHRNG gene and that only about 50 cases have been described. Key symptoms include webs of skin across the joints, severe contractures, and fluid buildup. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@rarectadvocate.comOct 10, 2026, 2:00 PM

Nemaline Myopathy 2 (NEM2) is a rare inherited muscle disease caused by NEB gene changes. Rod-like structures form in muscle cells, weakening the face, neck, limbs, and breathing muscles.

Learn more: buildingstrength.org

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

Info card for Nemaline Myopathy 2 (NEM2), a rare inherited muscle disease caused by changes in the NEB gene, which makes the muscle protein nebulin. The card notes that nemaline myopathy affects about 1 in 50,000 people and that NEB variants cause about half of all cases. Key symptoms include weakness of the face, neck, and trunk, breathing problems, and difficulty swallowing. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@kingtiger.bsky.socialOct 10, 2026, 2:36 AM

fri nite SHAW

BanShi is playing Silksong! LIVE NOW on Twitch

twitch.tv/felineroyalt...

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

#FelineRoyalty #cozy #disabled #LGBTQIAPlus

@rarectadvocate.comOct 9, 2026, 2:00 PM

Hereditary Spastic Paraplegia (HSP) is a group of rare inherited disorders where long nerve fibers to the legs slowly degenerate, causing progressive leg stiffness, weakness, & trouble walking.

Learn more: sp-foundation.org

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

Info card for Hereditary Spastic Paraplegia (HSP), a group of rare inherited disorders in which the nerve fibers that carry movement signals to the legs slowly degenerate. The card notes that more than 80 genes have been linked to the condition and that the most common type, SPG4, is caused by variants in the SPAST gene. Key symptoms include progressive leg stiffness, weakness, and bladder urgency. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@rarectadvocate.comOct 8, 2026, 2:00 PM

GM3 synthase deficiency is a rare inherited disorder that stops the body from making a fat the brain needs, causing severe infant epilepsy, hearing and vision loss, and developmental delays

Learn more https://www.cdgcare.org

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

Info card for GM3 Synthase Deficiency, a rare inherited disorder in which the body cannot make GM3, a fatty molecule the brain needs. The card notes that the condition is caused by variants in the ST3GAL5 gene and affects about 1 in 1,200 births among the Old Order Amish. Key symptoms include infant-onset seizures, hearing and vision loss, and severe developmental delays. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@kingtiger.bsky.socialOct 8, 2026, 4:05 AM

break it down

We need a chill night so we're playing more 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.comOct 7, 2026, 2:00 PM

Hyperprolinemia Type II is a rare inherited disorder where the body can't break down proline. A toxic byproduct inactivates vitamin B6, which can trigger seizures in childhood.

Learn more: https://dub.sh/HP-II

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

Info card for Hyperprolinemia Type II, a rare inherited metabolic disorder in which the body cannot fully break down the amino acid proline. The card notes that a toxic byproduct called P5C builds up and inactivates vitamin B6, and that blood proline levels can run 10 to 15 times higher than normal. Key symptoms include childhood seizures, often triggered by infection. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@angioedemanews.bsky.socialOct 6, 2026, 2:02 PM

#HAE #HereditaryAngioedema #LifeWithHAE #HAEAwareness #ChronicIllness #HaeCommunity #HaeWarrior #RareDiseaseAwareness #LivingRare #PatientEducation #ChronicCondition #SelfAdvocacy #InvisibleIllness #RareDiseaseCommunity #BioNews #AngioedemaNews

@rarectadvocate.comOct 6, 2026, 2:00 PM

Carnitine Palmitoyltransferase II (CPT II) Deficiency is a disorder that stops the body from burning long-chain fats for energy, causing muscle breakdown during exercise or illness.

Learn more: https://www.fodsupport.org

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

Info card for Carnitine Palmitoyltransferase II (CPT II) Deficiency, an inherited disorder in which the body cannot burn long-chain fats for energy. The card notes that the milder myopathic form is the most common and that attacks are triggered by exercise, fasting, or illness. Key symptoms include muscle pain, rhabdomyolysis with dark urine, and kidney injury. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@rarectadvocate.comOct 5, 2026, 2:00 PM

Spastic Tetraplegia, Thin Corpus Callosum, and Progressive Microcephaly (SPATCCM) is an inherited neurodevelopmental disorder caused by changes in the SLC1A4 gene.

Learn more: https://dub.sh/SPATCCM

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

Info card for Spastic Tetraplegia, Thin Corpus Callosum, and Progressive Microcephaly (SPATCCM), an ultra-rare brain disorder caused by changes in the SLC1A4 gene, which supplies the brain with serine. The card notes that fewer than 1 in 1,000,000 people are affected and that it was first described in 2015. Key symptoms include slowing head growth after birth, stiffness in all four limbs, and seizures. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
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