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About Fabry Disease what is Fabry disease & more
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Programs & Projects for the Fabry community
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Fabry Resources from the broader community
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About the NFDF organization & mission
About NFDF -
Welcome to Our Mothership! Thanks for visiting!Our website remains at the center of our education and outreach programs.
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Charles Kleinschmidt Fabry Family Weekend Camp… is September 2013 at Victory Junction
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In Their HonorStrength, courage, contribution and hope
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Recognize and Rescue EveryonePlease 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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We need your help!
"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy." -Martin Luther King Jr.
What's Happening in the Fabry Community? (Please use scrolll arrows to see more articles)
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Coast-to-Coast Fabrys Walkabout
19-03-2013
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 ...
Read moreFabry Disease Awareness Month April 2013
19-03-2013
April 2013 is Fabry Disease Awareness Month. The National Fabry Disease Foundation (NFDF) and the Fabry Support and Information Group (FSIG) have joined forces to facilitate submitting Governor's pr...
Read moreWe Honor and Remember ...
04-04-2012
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-threatenin...
Read moreMassachusetts General Hospital White Mat…
11-01-2012
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 consent to ge...
Read moreFabry Disease Community Announcements
We are seeking camp volunteers for our 20-22 September Charles Kleinschmidt Fabry Family Weekend Camp at Victory Junction in Randleman, NC. Travel is on Thursday and Sunday. Volunteers are needed to fill...
Read moreIf 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...
Read moreSunday April 7, 2013 11:30am -2:00pm The Lysosomal Storage Disorders Program at Massachusetts General Hospital invites you to join us for "Women’s Health Issues in Gaucher and Fabry Disease” Guest Speaker: Debra-Lynn Day-Salvatore, MD, PhD, FAAP, FACMG Director,...
Read moreAmicus Therapuetics is accepting applications to form a new US Fabry Patient Advisory Board (PAB). You may recall the last International Amicus Fabry Patient Advisory Board was from 2009 – 2011. Amicus is looking for...
Read moreWhy Early Diagnosis of Fabry Disease is so Important!
Juan Carlos
Kidneys failed, new transplant failed, dialysis restarted: Age 39
Pacemaker/defibrillator implanted: Age 39
Brian
Marc
Nathan
Cheryl
Sue
Kidney transplant: Age 71
Wes
Kidney Transplant: Age 43
Two Transient Ischemic Attacks: Age 46
Tammy
Kidney transplant: Age 38
Mike
Kidney transplant: Age 48
Stroke: Age 48
Cheryl
Congestive heart failure diagnosed: Age 47
Chronic kidney disease diagnosed: Age 53
TIA: age 54
Defibrillator: Age 55
Upcoming Meetings and Events
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02 Jun 2013Females with Fabry disease Spring Social 11:00 AM to 02:00 PM
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08 Jun 2013FSIG Fabry Get Together 12:00 PM to 03:00 PM
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20 Jun 2013Join us for a Fabry Webinar 06:30 PM to 07:30 PM
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22 Jun 2013FSIG Fabry Get Together 12:00 PM to 03:00 PM
Connect With Us
Do You Have Questions?
Visit our Frequently Asked Questions page to read about common questions related to Fabry disease.
Recent Tweets
Last 3 tweets from fabrydisease1:
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.
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
Visit Jerry's Blog Today!
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
Tell Your Story - Sharing is Caring
Telling our stories may really help someone else to understand and cope with Fabry disease. We have very common symptoms but many different experiences.
Fabry Family Weekend Camp
Each 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.
Fabry Disease Publications
The NFDF obtains licenses to various peer-reviewed medical publications about Fabry disease to provide free online access to our members.
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.
Find a Doctor Database
Find a physician or clinic. Search by treatment center or clinic, city, state, zip code or within a certain distance from your home or other location.
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!
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!
Faces of Fabry
Locations of the Fabry Disease Population
Contact Information
National Fabry Disease Foundation
4301 Connecticut Ave. N.W.
Suite 404
Washington DC 20008
NFDF NC Office
1913 Village Crossing Drive
Chapel Hill, NC 27517