Fabry Family Weekend Camp

Our camp is usually in September or October at Victory Junction in Randleman, NC.

We Need to Recognize and Rescue Everyone

Please participate in our Fabry disease education and awareness initiatives.

Welcome to Our Mothership!

Our website remains at the center of our education and outreach programs.

Patient Reported Outcomes (PROs) Program

We are learning from the PROs (individuals with Fabry disease)!

Did You Know?

The NFDF provides many Fabry community programs?

In Their Honor

Our community is full of strength, courage, contribution, and hope.

The International Fabry Community

Our fight with Fabry Disease does not have geographic boundaries.

Medical
Fabry Facilities
Children's Hospital of Colorado

Children's Hospital of Colorado

13123 East 16th Avenue | Aurora, Colorado 80045
720-777-0020

Contact person

Genetics and Inherited Metabolic Diseases

720-777-0020

Map Location

Map Directions

Contact Persons

Description

Fabry Facilities

Type

Service Provider

Department:

Genetics and Inherited Metabolic Diseases

Population:

Medium

Patient Demographic:

Children only

Facility Website:

https://www.childrenscolorado.org/doctors-and-departments/departments/genetics/metabolic/

Team

Janet Thomas

Doctor

Peter Baker

Doctor

Aaina Kochhar

Doctor

Fabry Community Announcements

2026 Webinar Series Information

Select the Read More link below for the 2026 Webinar Flyer to easily view and share our resources with everyone.

Read more...
2025 End of Year Fabry Focus e-Newsletter

Select the link below to the December 2025 Fabry Focus e-newsletter. Best wishes in 2026! Jerry, Casey, and Hannah

Read more...
16th Annual Fabry Family Education Conference on September 17-18, 2026

The National Fabry Disease Foundation's 16th annual Fabry Family Education Conference will be held on September 17-18,...

Read more...
15th Annual Fabry Family Camp at Victory Junction Camp on September 18-20, 2026

The National Fabry Disease Foundation's 15th annual Fabry Family Camp will be held on September 18-20, 2026, at...

Read more...

WHY EARLY DIAGNOSIS AND TREATMENT ARE SO IMPORTANT!

jerry

Severe hearing loss/hearing aids: age 50
Heart Attack: Age 52
Pacemaker/Defibrillator Implanted: Age 52
Heart Transplant: Age 65
Pacemaker
Implanted: Age 70

Lisa

Heart Attack: Age 38
Stroke: Age 40

Keith

Kidney Failure/Dialysis: Age 52
Transplant: Age 54

Becky

Open Heart Surgery: Age 44
Pacemaker/Defibrillator Implanted: Age 44

Mandy

Several Transient Ischemic Attacks in 30s
Strokes: Ages 38 and 40

Adam

Pacemaker: Age 32
Pacemaker/Defibrillator: Age 34

Cheryl

Pacemaker (1st of 4): Age 42
Congestive heart failure diagnosed: Age 47
Chronic kidney disease diagnosed: Age 53
TIA: age 54
Defibrillator: Age 55

Keith

Stroke: Age 25
Hearing aids: Age 32

Chris

Kidney transplant: Age 50

Lupe

Heart attack: Age 59
Stroke: Age 60

Tim2

Transient Ischemic Attacks: Ages 24 to 46
Strokes (six): Age 46
Cerebral Bypass Surgery: Age 46

Tim

Kidney failure/dialysis: Age 47

Linda Milan

Diagnosed: Age 55
Heart Stents placed: Ages 56 & 57

Chris

Kidney failure/dialysis: Age 38
Lost his battle: Age 41

Bob

Severe hearing loss: Age 50
Kidney failure/dialysis: Age 52
Kidney transplant: Age 52
Open heart surgery: Age 52
Brain aneurysm: Age 55
Heart attacks: Ages 57 & 58
Stroke: Age 58

Cheryl

Multiple transient ischemic attacks (TIAs) Age: 30s to 50s.

Juan Carlos

Kidney dialysis then transplant: Age 30
Transplant failed, dialysis restarted: Age 39
Pacemaker/defibrillator implanted: Age 39

Marc

Kidney transplant: Age 41

Nathan

Kidney failure/ dialysis: Age 18
Kidney transplant: Age 19

Crystal

Kidney failure/dialysis: Age 37
Awaiting transplant

Simon

Kidney failure/dialysis: Age 47
Hearing loss/cochlear implants: Ages 47 & 48

Wes

Kidney failure/dialysis: Age 38
Kidney transplant: Age 43
Two transient ischemic attacks: Age 46

Edward

Kidney failure/dialysis: Age 37
Kidney transplant: Age 39

Mike

Kidney failure/dialysis: Age 45
Kidney transplant: Age 48
Stroke: Age 48

Thanks for your support!

As an IRS 501(c)(3) non-profit charitable organization we rely on donations from organizations and individuals to provide meaningful programs and services to people/families with Fabry disease. Please give generously!

Thank you to our corporate/business sponsors as well as our many individual donors. Contributions of all sizes add up to make a tremendous difference.

Do You Have Questions?

Select the button below to see the answers to Frequently Asked Questions.

Frequently Asked Questions

Read Jerry’s Monthly Column!

Founder's
Corner

We continue to make great progress on finding new ways and improving current ways to support our community. We hope our efforts contribute to making your lives better! Founder and President, Jerry Walter

Join the fight against Fabry disease! Make your voice count to create positive change for people with Fabry disease and our families. One important way to help is to take our surveys for everyone's benefit.

Join Us

Our
Supporters

We are very grateful for the generous contributions of our corporate, organization, business and individual donors who all make our programs possible. Every size donation matters.

Supporters

Two Support
Organizations

The Fabry community is fortunate to have two complimentary support organizations providing a diverse set of programs and services. Join the Fabry Support & Information Group also.

Learn More

Featured Programs

Fabry Disease
Symptoms

There are many common Fabry disease symptoms that could lead to diagnosis and many symptoms to manage. They vary greatly among individuals.

Victory
Junction

Each September or October the NFDF hosts our annual Fabry Family Weekend Camp. Families with a 6-16 year child with Fabry disease may attend.

Check It Out

Family Assistance
Program

Individuals with Fabry disease and family members are invited to use our free, confidential, 24/7 Family Assistance Program. Counselors are there now.

Inquire

Our YouTube
Channel

The NFDF produces educational videos about a variety of topics related to Fabry disease. Please see our current videos and stay tuned for more!

Access Videos

Document
Archives

Are you looking for something you read sometime in the past? Find previously published newsletters and other documents here.

Find Documents

Fabry Disease
Publications"

The NFDF obtains licenses to various peer-reviewed medical publications about Fabry disease to provide free online access to our members.

Find Articles

Find A Fabry
Specialist

Use our convenient search application and map locator to find a Fabry specialist near you. Please contact info@fabrydisease.org to provide physician info.

Find Providers