Fabry Support & Information Group

09/04/2026

💙 September is Newborn Screening Month!

Every baby deserves the chance to grow up healthy and reach their full potential. Newborn screening helps make that possible by identifying certain rare conditions early—often before a baby shows any signs or symptoms.

At the Fabry Support & Information Group, we believe early detection can make a life-changing difference. Through our Testing for Tots program, we work to raise awareness of the importance of newborn screening and advocate for expanded screening for conditions like Fabry disease.

A few drops of blood. A simple test. A potentially life-changing opportunity.

Read their latest blog to learn more about newborn screening and why it matters. 💙

Newborn screening can detect serious rare conditions early. Learn about FSIG’s Testing for Tots program and efforts to add Fabry disease to state screening panels.

08/24/2026

A new week is a new opportunity to recognize just how far you’ve come. Living with Fabry disease can bring challenges and unexpected turns, but you are not defined by the difficult moments. Wherever this week finds you, take the next step at your own pace and remember that FSIG is here to support you along the way.

08/20/2026

Get the scoop: https://bit.ly/3SFxEPY

The Fabry Support & Information Group marks 30 years of advocacy as founder Jack Johnson transitions leadership to new director Lisa Bacon.

08/13/2026

Living with Fabry can mean making choices that others may not always understand. Remember that advocating for yourself includes giving yourself permission to rest, setting boundaries, explaining your needs, and saying “not today” when your health comes first. Your well-being matters and taking care of yourself is never something you need to apologize for.

08/10/2026

🦓 Why are rare disease patients called "zebras"?🦓

If you've spent time in the rare disease community, you've probably seen the zebra symbol. There's a meaningful reason behind it.

In medical school, students are often taught, "When you hear hoofbeats, think horses, not zebras," meaning common conditions are usually the most likely diagnosis. But for the more than 300 million people worldwide living with a rare disease, the answer is sometimes a zebra.

For many individuals with Fabry disease, the journey to diagnosis can take years. Symptoms are often overlooked or mistaken for more common conditions. The zebra reminds us that while rare diseases may be uncommon individually, together they affect millions of people who deserve timely diagnosis, and compassionate, appropriate care.

At FSIG, we're proud to stand with our incredible community of zebras. That means patients, caregivers, families, clinicians, and researchers working together to raise awareness, improve education, and ensure that no one has to navigate Fabry disease alone.

Every zebra has a story and every one of those stories matters.

08/06/2026

Individuals and families affected by Fabry disease are invited to join FSIG at WORLDFair 2026 on September 18 at the University of Minnesota Landscape Arboretum in Chaska, Minnesota. This free educational event led by the Genetics Department of University of Minnesota Twin Cities, offers an opportunity to connect with experts, learn about the latest developments in Fabry disease research and care, and meet others who understand the rare disease journey. Whether you attend in person or via Zoom, you'll gain valuable information, encouragement, and community. Reserve your spot today. REGISTER at worldfair.health.

We look forward to seeing you!

08/03/2026

Fabry disease is much too complex to navigate alone. Build a care team that sees the whole you, not just your diagnosis. A multidisciplinary team working together can help you manage symptoms, protect your long-term health, and give you the support you deserve. Don’t be afraid to ask questions and make your voice heard. The most effective care begins with strong and genuine relationships.

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.