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Fabry International Network @fabryintnetwork

FIN is an independent & vibrant network of Fabry patient associations whose purpose is to collaborate, communicate, promote best practices & empower patients fabrynetwork.org International Joined March 2013
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Fabry International Network @fabryintnetwork

9 months ago

🌍 Don’t miss our #FabryMoments webinar: Building Your Care Matters! Discover how multidisciplinary care improves Fabry disease management and wellbeing. 🗓 Nov 13 | 17:00 CET 🔗 Register via the link! #FabryDisease #RareDisease #PatientCare form.jotform.com/25188325043735…

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Fabry International Network @fabryintnetwork

9 months ago

Join us for an insightful online webinar exploring “Fabry Through the Female Cycle” with Dawn Laney, genetic counselor and expert in Fabry disease. Organized by FIN with the support of Chiesi Global Rare Diseases. 🗓️ Thursday, Nov 20 🕔 5:00 – 6:00 PM CET zoom.us/meeting/regist…

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Fabry International Network @fabryintnetwork

9 months ago

Join our next #FabryMoments webinar: Your Monitoring Matters! Learn how to monitor your kidneys, heart & nervous system and the latest on biomarkers. Oct 23 - 17:00 CEST 🔗 Register via the link #FabryDisease form.jotform.com/Charlotte_coor…

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Fabry International Network @fabryintnetwork

2 years ago

“My dad is my Fabry hero. My parents knew there was a chance that their kids would be affected by Fabry, but they always did everything in their power so we could be living the best lives possible.“ — Woo, 17, South Korea #FabryHeroes #fabryawarenessmonth

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Fabry International Network @fabryintnetwork

2 years ago

“Natasja is my Fabry hero. We met on a Young Adults weekend and immediately clicked and became very close on the trip. She’s a friend for life who knows exactly what I’m going trough.” — Michelle, 21, The Netherlands #FabryHeroes #FabryAwarenessMonth

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Fabry International Network @fabryintnetwork

2 years ago

We’re surrounded by incredible Fabry heroes such as families, friends, medical teams who are always there for us. But don’t forget… You’re the real superhero facing the disease every single day. Never forget how strong and amazing you are! #FabryHeroes #FabryAwarenessMonth

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Fabry International Network @fabryintnetwork

2 years ago

“My therapist is definitely my Fabry hero. My visits to my therapist help me cope with setbacks and bad days, so let this also be a reminder that it is okay to seek help if you feel like you need it.” — Nick, 27, United States #FabryHeroes #FabryAwarenessMonth

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Fabry International Network @fabryintnetwork

2 years ago

At FIN we’re so lucky to be surrounded by Fabry heroes! YOU, who faces Fabry every single day, who educates about the disease, who are living with someone affected by Fabry, who inform the community, who are a healthcare professional. Every single one of you is a Fabry hero.

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Fabry International Network @fabryintnetwork

2 years ago

“My husband is my Fabry hero. From the moment we met, he has been educating himself and learning more about Fabry every day. He's always there to help whenever and wherever I need it. He’s my biggest support.” — Danielle, 52, Germany #FabryHeroes #FabryAwarenessMonth

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Fabry International Network @fabryintnetwork

2 years ago

Happy Fabry International Women’s Day! This special day was brought to life to raise awareness about women and girls affected by Fabry disease. Let’s celebrate all the superhero women today. #FabryHeroes #FabryAwarenessMonth

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Fabry International Network @fabryintnetwork

2 years ago

“My nurse always goes above and beyond to make me feel welcomed, heard and comfortable during my treatment. She’s the key person in my medical team and has been with me through all of my good and bad days.” — Gina, 33, Japan #FabryHeroes #FabryAwarenessMonth

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Fabry International Network @fabryintnetwork

2 years ago

It’s Fabry Awareness Month! This April we want to shine a light on the support system of people living with Fabry. They are true superheroes! Who is your Fabry hero? #FabryHeroes #FabryAwarenessMonth

Fabry International Network retweeted
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AIAF APS @AiafAps

3 years ago

Si è concluso il primo Young Adult Weekend 2023 organizzato dal @fabryintnetwork a Barcellona, un evento che mira a formare la prossima generazione di sostenitori dei pazienti Fabry. Per l’Italia, hanno partecipato Chiara, Michele e Tatevik. Grazie per aver rappresentato AIAF!

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Fabry International Network @fabryintnetwork

3 years ago

Come to the #LysosomalDisease Summit, 27–29 Oct, to explore a way forward and collaborate! Network with me and other clinicians and researchers as we ALL take the next steps to overcome barriers to diagnosis and treatment. Register today: bit.ly/LDSummit2023

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Fabry International Network @fabryintnetwork

3 years ago

Because #Fabry is a hidden disease there aren’t many signs that I sometimes struggle. People assume you're fine because you look fine. I try to avoid drawing attention to myself, but it's important to speak out. — Alex, 16, Poland #FabryAwarenessMonth #FabryDisease #Fin #1FDSM

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Fabry International Network @fabryintnetwork

3 years ago

“My friends challenge me to keep an active life. They’ll remind me that #FabryDisease is not the only thing that defines me. Their enthusiasm works contagiously, and when it’s a bit too much, I’m always allowed to say no.” — Bo, 33, China #FabryHeroes #FabryAwarenessMonth #1FDSM

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Fabry International Network @fabryintnetwork

3 years ago

“Meeting other people with #Fabry gives me energy. We automatically have a bond, because we have this rare disease in common. I’m very grateful for my Fabry family.” — Mary, 55, United States #FabryHeroes #FabryAwarenessMonth #FabryDisease #FabryInternationalNetwork #Fin #1FDSM

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Fabry International Network @fabryintnetwork

3 years ago

“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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Fabry International Network @fabryintnetwork

3 years ago

“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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Fabry International Network @fabryintnetwork

3 years ago

“I used to be focused on everything I can’t do because of #Fabry. Conversations with other people with Fabry changed that. By setting my own limits and believing in myself I can achieve so much more.” — Ji-Woo, 19, South-Korea #FabryHeroes #FabryAwarenessMonth #Fin #1FDSM

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