Fabry Support & Information Group

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Concordia, MO
Fabry Support & Information Group

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

07/30/2026

Looking to learn more about kidney health and how students are making a difference in their communities?

Join UCLA Health CORE Kidney Conversations for Bruin Beans: Learn How Students are Making a Difference Beyond Campus!

🗓 Saturday, August 1
🕔 5:00–6:00 PM PT
💻 FREE • Virtual • Open to the Public

This interactive webinar is designed for patients, caregivers, students, and anyone interested in kidney health. Hear from UCLA students involved with the Bruin Beans Health Club, learn about kidney wellness, community engagement, and have your questions answered during the live session.

Questions can also be submitted in advance to [email protected].

👉 Register today and feel free to share this opportunity with others who may be interested!

🔗 https://www.uclahealth.org/programs/CORE-Kidney

This event is hosted by UCLA Health CORE Kidney Conversations. FSIG is pleased to share educational opportunities that may be of interest to the Fabry community.

07/27/2026

This past weekend, the Fabry Support & Information Group was honored to bring together patients and caregivers from across the South Central region for a time of education and connection in Little Rock, Arkansas.

A huge shoutout to everyone who traveled to join us, was kind enough to share their stories, and ask important questions. Your willingness to do so is a perfect example of the strength that is within our community and what makes these gatherings so special.

We are especially grateful to Dr. Andrew Burrow of Arkansas Children's Hospital for sharing his expertise and helping our families better understand Fabry Disease and the importance of monitoring and care. Thank you also to our valued industry partners for your continued support to our families.

Weekends like this reinforce that no one should have to navigate Fabry disease alone. Together, we can continue to build a more connected and empowered community.

We can't wait to see you at our next FSIG event!

Arkansas Children's

07/22/2026

💚 July is Disability Pride Month 💚

Every July, we celebrate Disability Pride Month, commemorating the signing of the Americans with Disabilities Act (ADA) on July 26, 1990. It is a time to recognize the strength and resilience of people living with disabilities while promoting understanding and inclusion.

For many individuals living with Fabry disease, disability is often invisible. Chronic pain, hearing loss, fatigue, heat/cold intolerance, GI challenges, emotional hardships, and other symptoms may not be seen by others, but they are very real and can have a huge impact on daily life.

This month, FISG proudly honors everyone living with Fabry disease and the families and caregivers who support them. Together, we continue to raise awareness, advocate for change, and remind the world that invisible disabilities deserve to be seen, understood, and respected.

07/21/2026

Ladies....you don't have to walk the Fabry journey alone.

There is something truly special about being in a room with women who understand the challenges, victories, and emotions that come with living with Fabry disease or caring for someone who does.

FSIG's Women's Summit this October in Minneapolis is more than a meeting. It's a place to connect, learn, laugh, share, and leave feeling supported by a community that truly "gets it."

Whether you're newly diagnosed or have been living with Fabry for years, you'll find meaningful conversations, valuable education, and friendships that can last a lifetime.

Registration is still open, and we'd love to welcome you. Come as you are, and leave knowing you're never alone.

Register today at https://www.fabry.org/womens-summit!

07/20/2026

At FSIG, we believe that self-care and accurate education are two of the most powerful tools you need to live your best life with Fabry. Whether you're newly diagnosed or have been navigating this disease for years, never stop learning, asking questions, and taking time to care for yourself.

07/14/2026

Fabry patients and family members are invited to two upcoming Chiesi-sponsored Discovery Days. Connect with others in the Fabry community while learning from experts about living with Fabry disease, managing your health, and the latest advances in care and research. These free educational programs provide a welcoming opportunity to ask questions, share experiences, and build meaningful connections with fellow patients and families. Events take place on July 25 in Des Moines, Iowa, or August 8 in Oak Brook, Illinois. Enjoy a day of education, support, and community.

Register at chiesidiscoverydays.com!

07/13/2026

Every sunrise is a reminder that hope is renewed. May this week bring you strength for the hard days and peace in the quiet moments and never forget you have an entire Fabry community cheering you on. 👏💪

07/10/2026

Today, on Chronic Disease Day, we recognize the incredible strength and resilience of everyone in the Fabry community.

Living with Fabry disease means facing challenges that are often invisible to others. But every day, patients and caregivers continue to show remarkable courage as they navigate appointments, treatments, symptoms, and the uncertainties that come with a lifelong chronic disease.

To every individual living with Fabry and every caregiver walking alongside them: we see you, we celebrate you, and we stand with you.

07/06/2026

The Summer 2026 edition of the FSIG Connection is here!
https://www.fabry.org/fsig-connection-newsletters

This issue is filled with inspiring patient stories, important treatment and research updates, Fabry Awareness Month highlights, provider insights, and the latest news from across the Fabry community—including an exciting new chapter for FSIG.

Whether you're living with Fabry disease, caring for someone who is, or simply want to stay informed, there's something for everyone.

Take a few minutes to explore the latest issue—we hope you'll find information, encouragement, and hope along the way. 💚

07/01/2026

Join the Fabry Support & Information Group on July 24–25 for a free weekend of education, support, and connection for individuals and families affected by Fabry disease in Arkansas, Louisiana, Oklahoma, Mississippi, West Tennessee, and South Missouri. Meet others who understand your journey, hear from featured speaker Dr. Andrew Burrow of Arkansas Children's Hospital, and learn about valuable financial assistance resources from the Patient Advocate Foundation.

The weekend begins with a Friday evening welcome reception, followed by Saturday's educational program at the Embassy Suites–Little Rock. Hotel rooms are available, with limited lodging assistance for those who qualify. Whether you're newly diagnosed or have been living with Fabry for years, you'll leave feeling more informed, connected, and empowered.

REGISTER TODAY AT https://www.fabry.org/patient-meetings.

Address

108 NE 2nd Street
Concordia, MO
64020

Website

http://www.Fabry.org/

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