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  • In Their Honor

    Strength, courage, contribution and hope
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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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  • 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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  • 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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  • In Their Honor
  • Welcome to Our Mothership! Thanks for visiting!
  • Take Our Surveys Contest
  • Charles Kleinschmidt Fabry Family Weekend Camp
  • 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.
Thursday, April 02, 2015

"One way to keep momentum going is to have constantly greater goals." -Michael Korda

Fabry Disease Community Announcements

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A very special opportunity for April 201…

01-04-2015 Hits:3518 Clinical Trials

WE HAVE A VERY SPECIAL OPPORTUNITY THIS MONTH IN HONOR OF FABRY DISEASE AWARENESS MONTH, OUR FIRST EVER MATCHING CONTRIBUTION CAMPAIGN.   During Fabry Disease Awareness Month in April, the Kleinschmidt Family Foundation has generously offered to match your individual donations up to a total of $10,000 to support the 2015 Charles...

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Submit 2015 family camp applications on …

24-03-2015 Hits:8974 Clinical Trials

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 and conference on 24-27 September, 2015. Travel is on Thursday for most families, returning on Sunday. Please review the medical packet...

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2015 Victory Junction Camp Volunteers Ne…

24-03-2015 Hits:8718 Clinical Trials

We are seeking camp volunteers for our 25-27 September Charles Kleinschmidt Fabry Family Weekend Camp at Victory Junction in Randleman, NC. Travel is on Thursday if you are attending the conference (24-25 Sept) also or Friday for camp only and then return Sunday. Volunteers are needed to fill positions as family crew...

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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

Wow, the last 10 years went by quickly! In June the National Fabry Disease Foundation will celebrate its 10 year anniversary. We are very proud of what we have accomplished but still have a long, arduous journey ahead of us. There is still so much to be accomplished. I remain very fortunate and proud to serve the Fabry community. March 2015.  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