@FabryOrg

Increasing awareness for those with Fabry disease to create a brighter future, and better lives today - Education, Support, Awareness and Advocacy

 Concordia, MO
Fabry.org
Joined March 2014
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  • Following68
  • Followers384
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Did you know April is #FabryAwarenessMonth? Fabry is a #RareDisease affecting 1 in 40,000 individuals and Accessia Health is proud to support those living with the condition. Learn more here: bit.ly/3JWgCFv 💙 #FabryAwareness #AccessiaHealth
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We were excited to receive a @WORLDSymposia New Treatment Award recognizing our work to develop a therapeutic option for people living with Fabry disease. Diego Ardigò, Head of R&D, shares a message of gratitude for the #Fabry community. b.link/oqury314
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This month our Carrier Connections program featured Fabry disease with support from @FabryOrg. For our final #FactFriday, we want to draw attention to the mental health struggles females with Fabry disease may face. Mental health needs to be taken seriously!
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It's the first Friday of the month, which means it's our first #FactFriday on Fabry disease! This fact shows that many females live decades without being diagnosed with or treated for Fabry disease, despite showing symptoms of the disease.
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Lysosomal Disorders CME Quarterly Series: Kidney Involvement in Lysosomal Disorders Register Now! us06web.zoom.us/webinar/regi…
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A groundbreaking new study conducted by @EveryLifeOrg revealed that delayed #RareDisease diagnosis can cost up to $517k per patient. Advancements in policies and technologies can allow for timely diagnoses and improved health outcomes. Learn more: b.link/4fb225
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Last week, we joined @copayscount in urging @HHSgov and @USDOL to enforce a rule requiring insurers and #PBMs to count copay assistance toward enrollees’ annual deductible and total out-of-pocket costs. rb.gy/f4wt2
A young boy wears a blue suit, red cape, and red mask as if he's Superman. The overlaying text has a TAF logo and the words "Proud to Partner."

ALT A young boy wears a blue suit, red cape, and red mask as if he's Superman. The overlaying text has a TAF logo and the words "Proud to Partner."

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Thank you @ChiesiGRD for helping us tell or story! Fabry patients, caregivers, medical providers and advocates we need your help to expand newborn screening! Reach out to us @FabryOrg to see how you can help! [email protected] or DM me! m.youtube.com/watch?v=twR3di…
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$PLX - Protalix surges ~15% after Fabry disease therapy Elfabrio wins FDA approval seekingalpha.com/news/396891…
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Today we announced with our partner @Protalix_Bio that the U.S. FDA has approved a treatment option for adults living with Fabry disease. For details, see our press release: bit.ly/42ARgnW #Fabrydisease #Fabry #RareDiseases #ChiesiGlobalRareDiseases
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Tomorrow is #NationalNursesDay. As we celebrate the start of National Nurses Week, we’re grateful for the nurses working to keep us healthy.
An older white woman in a teal shirt smiles in her wheelchair. A nurse hold her hand and smiles toward the camera. The overlaying text says "National Nurses Day."

ALT An older white woman in a teal shirt smiles in her wheelchair. A nurse hold her hand and smiles toward the camera. The overlaying text says "National Nurses Day."

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May is Women’s Health and Mental Health Awareness Month. Remember the Girls is dedicated to supporting and advocating for both Women’s Healthcare and Mental Health care. This month we will explore the intersection of these topics with patient experiences, infographics, and more!
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#Fabrydisease is a rare disease which is manageable if caught early. This month, we've worked to raise awareness so that we may improve recognition, diagnosis, understanding & management of it. Below are parts of the body of which, some may be affected by Fabry disease.
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“Everything changed, once I got in touch with the right physician. She takes her time to listen and helps me to stay on track monitoring my symptoms. My wife called her a hero. I think she’s right.” — Moses, 41, Egypt #FabryHeroes #FabryAwarenessMonth #Fabry #FabryDisease #1FDSM
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Here at Idorsia, we are looking for treatments for patients suffering from lupus and Fabry disease - two diseases whose symptoms can be exacerbated by stress. Join us in raising awareness during Stress Awareness Month! #StressAwarenessMonth #Pharmaceutical #Lupus #FabryDisease
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We're back with another fact about Fabry disease! April is Fabry Disease Awareness Month, and we are featuring Fabry disease this month as part of our Carrier Connections program. #FactFriday #CarrierConnections #FabryDisease
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“Instead of being afraid, worried, or embarrassed that I have #FabryDisease, I try to be confident. It's okay to tell people you're suffering and help them to understand what you're going through.” — Lou, 12, Denmark #FabryHeroes #FabryAwarenessMonth #Fabry #Fin #1FDSM
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“My daughter called me a ‘supermom’ for always giving 100%, despite the obstacles of #FabryDisease. That made me smile and cry at the same time. My kids are the source of all my ‘superpowers’.” — Vicky, 49, Canada #FabryHeroes #FabryAwarenessMonth #Fin #1FDSM
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#FabryHeroes assemble! The #FIN board puts their masks on to celebrate the everyday heroes fighting #FabryDisease. You too can show your support by liking and sharing our posts, or giving a shout-out to your #Fabry Hero! #FabryAwarenessMonth #FabryInternationalNetwork #1FDSM
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“Because #FabryDisease is so uncommon I’ve had to explain it a 1000 times. It can be tiring to prove myself again and again. That’s why my family’s support is everything. I’m glad I don’t have to fight #Fabry alone.” — Tarak, 38, India #FabryHeroes #FabryAwarenessMonth #1FDSM
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