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  • Welcome to Our Mothership! Thanks for visiting!

    Our website remains at the center of our education and outreach programs.
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  • Many great resources are available!

    We’ll do our best to keep you informed of other great programs.
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  • Take Our Surveys Contest

    … a global program for our community, by our community. Please participate!
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  • Charles Kleinschmidt Fabry Family Weekend Camp

    … is September 2014 at Victory Junction
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  • In Their Honor

    Strength, courage, contribution and hope
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  • Recognize and Rescue Everyone

    Please support our Fabry disease awareness initiatives
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  • We welcome our international Fabry community.

    Our fight with Fabry disease does not have geographic boundaries!
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  • Do you know?

    The NFDF provides many Fabry community programs.
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  • Welcome to Our Mothership! Thanks for visiting!
  • Many great resources are available!
  • Take Our Surveys Contest
  • Charles Kleinschmidt Fabry Family Weekend Camp
  • In Their Honor
  • Recognize and Rescue Everyone
  • We welcome our international Fabry community.
  • Do you know?

We need your help!

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

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  • Thank you to our corporate and foundation sponsors as well as our many individual donors. Contributions of all sizes add up to make a tremendous difference. Read more about ways to support people with Fabry disease.
Tuesday, December 23, 2014

"The work an unknown good man has done is like a vein of water flowing hidden underground, secretly making the ground green." -Thomas Carlyle

Fabry Disease Community Announcements

08-05-2014
Expression of Hope III
Expression of Hope III

Please participate in the 2014 Expression of Hope III program.   Visit www.expressionofhope.com to learn about submission requirements and please see the attached flyer . Expression of Hope flyer  All entries must be received...

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21-03-2013
2014 Victory Junction Camp Volunteers Needed

We are seeking camp volunteers for our 26-28 September Charles Kleinschmidt Fabry Family Weekend Camp at Victory Junction in Randleman, NC. Travel is on Thursday and Sunday. Volunteers are needed to fill...

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20-03-2013
Prepare to submit applications for our 2014 camp

If you have a child between 6-16 years of age with Fabry disease, please submit a family application beginning July 1st to attend our annual Charles Kleinschimdt Fabry Family Weekend Camp...

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06-04-2011
Please send us your Fabry community announcements

Do you have news or information you would like to share with the Fabry community in this section of our website? Please send proposed announcements to Jerry Walter at jerry.walter@fabrydisease.org....

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What's Happening in the Fabry Disease Community (Please use scrolll arrows to see more articles)

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Dani Goes to Fabry Family Camp

Dani Goes to Fabry Family Camp

  ... by Dawn Laney with illustrator Michael Johnson.  We are very pleased to announce two new educational books for pre-teens and teens with Fabry disease. Dawn Laney, Genetic Counselor/Research Coordinator and all...

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The Long Road to Fabry

The Long Road to Fabry

... by Abigail Carbone.  We would like to give a huge thank you to Abigail Carbone, a senior in high school, who wants to give back to the world of Lysosomal...

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Transitions: Managing Your Own Healthcar…

Transitions: Managing Your Own Healthcare - What Every Teen with an LSD Needs to Know

  by Dawn A Laney MS, Carol Ogg BS, Nadia Ali PhD.  The teenage years are a time when teens often begin separating their thoughts, goals, and self-image from those of their parents. They begin...

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Coast-to-Coast Fabrys Walkabout

Coast-to-Coast Fabrys Walkabout

The Coast-to-Coast Fabrys Walkabout ... Courtnay Midkiff's incredible journey to support people with Fabry disease. On March 1, 2013, 23 year old Courtnay Midkiff started his journey walking from the east coast...

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We Honor and Remember ...

We Honor and Remember ...

We honor and remember those who have passed away from Fabry disease.   Photo: Ken Walter. We have experienced a great deal of tragedy in the Fabry community due to the life-threatening nature of...

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Massachusetts General Hospital White Mat…

Massachusetts General Hospital White Matter Study

MGH White Matter Study for people with Fabry DIsease Massachusetts General Hospital is conducting a study using copies of past and future MRI scans of the brain. They just need your...

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Why Early Diagnosis of Fabry Disease is so Important!

Chris
Bob
Juan Carlos
Brian
Marc
Nathan
Cheryl
Wes
Tammy
Mike
Cheryl
Becky
Jerry
Edward

Chris

Kidney Failure/Dialysis: Age 38 Awaiting Transplant

Bob

Kidney failure/dialysis: Age 52
Kidney transplant: Age 52
Open heart surgery: Age 52
Brain Aneurysm: Age 55
Severe hearing loss: Age 50

Juan Carlos

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

Brian

Kidney failure/dialysis: Age 37 Awaiting Transplant

Marc

Kidney transplant, age: 41

Nathan

Kidney Failure/ Dialysis: Age 18 Kidney Transplant: Age 19

Cheryl

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

Wes

Kidney Failure/Dialysis: Age 38
Kidney Transplant: Age 43
Two Transient Ischemic Attacks: Age 46

Tammy

Kidney failure/dialysis: Age 31
Kidney transplant: Age 38

Mike

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

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

Becky

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

Jerry

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

Edward

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

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Do You Have Questions?

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Visit our Frequently Asked Questions page to read about common questions related to Fabry disease.

Join the Fight

Join the fight against Fabry disease! Make your voice count to create positive change for people with Fabry disease and our families.

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Founder's Corner

Greetings everyone! We've come a long way and I'd like to share a few things with you from time to time. Thanks for listening (reading) and for your input and participation. I remain very fortunate and proud to serve the Fabry community. June 2012.  Founder and President, Jerry Walter

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Visit Jerry's Blog Today!

Featured Programs

Fabry Disease Symptoms

There are many Fabry disease symptoms that could lead to diagnosis and treatment options. It is also very important to understand your symptoms for better health management

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Tell Your Story - Sharing is Caring

Stories from people with Fabry disease and their familiesTelling our stories may really help someone else to understand and cope with Fabry disease. We have very common symptoms but many different experiences.

Read Stories

Fabry Family Weekend Camp

victory-junction-260Each September we hold the annual Charles Kleinschmidt Fabry Family Weekend Camp at the Victory Junction in NC. Families with a 6-16 year old child with Fabry disease may attend.

Check it out!

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

Family Assistance Program

Individuals with Fabry disease and family members are invited to participate in our free, confidential Family Assistance Program. Counselors are standing by 24/7. Any personal issue is okay.

Get Help

Find a Doctor Database

Use our convenient search application and map locator to find a clinic near you. We will be updating this information to provide improved service.

Search Clinics

Our YouTube Channel

The National Fabry Disease Foundation intends to produce educational videos about a variety of topics related to Fabry disease. Please see our current videos and stay tuned for more!

Access Videos

Remembering Family and Friends

Please take a moment to remember our family and friends who have passed away from Fabry disease. We keep them in our thoughts and prayers!

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Featured Resources

Books
Joe Learns About Fabry

Title:
Joe Learns About Fabry

Click to view

Books
Dani Goes to Fabry Camp

Title:
Dani Goes to Fabry Camp

Click to view

Books
The Long Road to Fabry

Title:
The Long Road to Fabry

Click to view

Books
Transitions

Title:
Transitions

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Books
Faber the Dragon

Title:
Faber the Dragon

Click to view

PDFs
Schedule of Assessments

Fabry Registry Minimum Recommended Schedule of Assessments.

Click to view

PDFs
Schedule of Assessments

USB Drive Medical Alert Cards

Click to view

PDFs
Fabry Disease Symptoms Presentation

Fabry Disease Symptoms Presentation

Click to view