Fabry Support & Information Group

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Concordia, MO
Fabry Support & Information Group

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FSIG strives to meet the ever-increasing needs of of individuals with Fabry Disease and their families.

Founded in 1996, this group was created by Fabry patients to share information with others suffering from the disease and their families as well as educate about treatment options. FSIG offers a range of programs and services for the benefit of the Fabry community. FSIG serves as a unified voice for many in the Fabry Community

10/21/2026

🔬 Fabry Disease Research Opportunity!

ClearView Healthcare Partners is seeking to better understand the experiences and perspectives of people living with Fabry disease in the United States.

🔹The study welcomes adult and pediatric patients, males and females, and caregivers with experience with enzyme replacement therapy (ERT) and/or substrate reduction inhibitor (SRI) therapy.

🔹Participation involves a 60-minute telephone interview about diagnosis, symptoms, treatment experiences, sources of support, and thoughts on current and future therapies.

🔹Participation is voluntary, and responses will remain confidential. Eligible participants who complete the interview will receive $100 compensation.

Interested in participating or learning more? Contact Slater Hurst at [email protected].

Your voice and experiences can help inform a better understanding of life with Fabry disease!

10/20/2026

What a wonderful weekend at the FSIG Women’s Summit in Minneapolis! We're so grateful to all the incredible women who joined us, shared their stories, made meaningful connections, and reminded us of the strength we find in one another. Thank you to our amazing speakers for sharing their knowledge and experiences, and to our generous sponsors for helping make this special event possible.

These are just a few highlights from the weekend! Stay tuned for additional photos and memories from a truly meaningful gathering.

Chiesi Global Rare Diseases Sanofi US Patient Advocate Foundation BioMarin Pharmaceutical Inc. for Tots PTC Therapeutics

10/14/2026

💙 You're Invited to a FSIG Fabry Get-Together in Costa Mesa, CA! 💙

Living with Fabry disease can sometimes feel like a lonely journey. That’s why connecting with others who share similar experiences is so meaningful.

Join FSIG on November 8 from 11:30 AM–2:30 PM at Maggiano’s in Costa Mesa, CA, for an afternoon of delicious food, education, and connection.

✨ Meet other area Fabry patients and families who understand your journey
✨ Hear from guest speaker Dr. Virginia Kimonis of UCLA-Irvine
✨ Get the latest updates from our industry partners
✨ Share your stories, learn from one another, and build meaningful connections that remind us we’re never alone!

Whether you’re newly diagnosed or have been part of the Fabry community for years, we’d love to see you there!

📅 Register by November 1 at fabry.org!

10/09/2026

As the leaves change and the air turns cooler, may this season bring moments of peace, renewed hope, and reminders that even through life’s challenges, we are never alone. No matter what this season brings....we face it together.

10/07/2026

FSIG is happy to welcome Therapeutics as our Tulip Sponsor supporting this year’s FSIG Women’s Summit! Their commitment to building relationships with the Fabry community and providing support help events like this possible.

Thank you for standing with women and families affected by Fabry disease and helping us educate, connect, and empower our community!

10/06/2026

We are incredibly grateful to our Orchid Sponsors, our highest level, for helping make our October 16-18 FSIG Women’s Summit in Bloomington, MN possible!

Thank you to (a wholly owned subsidiary of ), Chiesi Global Rare Diseases , and Sanofi for supporting this important gathering of women living with Fabry disease and the caregivers who walk alongside their loved ones.

We’re also pleased that representatives from each organization will be joining us at the Summit, providing an opportunity for attendees to connect, ask questions, and build meaningful relationships.

Their support helps create this special space for connection, education, advocacy, and community.

Thank you again to our industry partners for their continued investment in the Fabry community! We look forward to seeing you all soon!

10/05/2026

Mark Your Calendars!

You won't want to miss our annual national conference, FEFC 2027. We'll be headed to sunny Scottsdale, Arizona March 19-21 for a weekend of learning, fun, and most of all connection.

Watch for registration and more details coming soon!

09/30/2026

has published a letter addressed to the Fabry community regarding its Fabry disease program and recent developments. We encourage patients, caregivers, and members of our community to review the letter for information directly from PTC.

As always, FSIG remains committed to keeping our community informed and connected to relevant updates in the Fabry landscape.

TO READ THE LETTER IN ITS ENTIRETY, PLEASE GO TO:https://www.ptcbio.com/wp-content/uploads/sites/2/2026/09/PTC-Therapeutics-Sept-2026_Fabry-Community-Update.pdf

09/29/2026

Want to stay "in the know?" Take a moment to update your contact information by completing our online membership form. Keeping your information current ensures you stay connected and receive the latest news, resources, programs, events, and opportunities FSIG has to offer.

Help us spread the word by sharing the membership form with your family and friends so they, too, can stay connected to the Fabry community.

Aren't a member yet? Join for FREE today at fabry.org!

09/23/2026

📢 Medicare Open Enrollment is coming!

Helping a loved one navigate Medicare coverage can bring plenty of questions. Join Caregiver Action Network tomorrow for a free webinar designed to help caregivers better understand Medicare and prepare for the **2027 Open Enrollment season**.

🗓️ Thursday, September 24
⏰ 3 p.m. ET
💻 Medicare Made Clear: A Caregiver’s Guide to Understanding Coverage Before Open Enrollment

Experts will cover:
• Medicare Parts A, B & D
• Coverage for injectable and infused medications
• Questions to ask when reviewing plans
• Common misconceptions and pitfalls
• Where to find reliable Medicare information and support

Whether you're helping a loved one enroll for the first time or review existing coverage, this session can help you feel more prepared.

👉 Register now: https://www.caregiveraction.org/medicare-open-enrollment/

Address

108 NE 2nd Street
Concordia, MO
64020

Website

http://www.Fabry.org/

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