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Thursday, 14 June 2012 08:18

The International Fabry Disease Community

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Greetings! The National Fabry Disease Foundation (NFDF) welcomes and encourages people around the world to sign-up (create an account) on the NFDF website and to make use of our programs to the greatest extent possible. We have many programs that may be useful to our international community and we will strive to create more!

We view the Fabry disease community as individuals with Fabry disease and family members as well as our friends, physicians and clinical staff, researchers, care providers, and supporters. Participation, input, feedback and collaboration across all sectors of our community are important to enable people with Fabry disease to live better and longer lives.

First, we believe it is extremely important for people with Fabry disease and individuals in the broader Fabry disease community around the world to support your respective national and regional patient/ family support groups and to also support the activities of the Fabry International Network (FIN). Many Fabry support organizations/organisations around the world offer valuable education, information, assistance and support programs to benefit their respective Fabry disease communities.

Conversely, each national and regional organization/organisation needs your participation and support to better understand your national and regional needs, to enable development of the best support programs possible tailored to your community, and to become a strong voice for positive change where you live.

We also believe it is important to make use of all the various resources available worldwide to improve your understanding of Fabry disease, to benefit from every resource or program possible, and to improve your chance to live better and longer lives.

As such, the National Fabry Disease Foundation welcomes and encourages people around the world to sign-up on our website and visit us frequently, subscribe to our newsletter, “Like” our face book page, subscribe to our YouTube channel and Inspire discussion page, follow us on Twitter, and make use of our education, awareness and assistance resources. We hope to make as many of our resources useful to the global Fabry community as possible.

Wherever you live, please use National Fabry Disease Foundation education, information, awareness and support resources as they become available. A few of our programs warrant special mention.

  • We believe our 15 minute YouTube symptoms video is a great tool to gain a better understanding of Fabry disease and to educate family members, friends, supporters, and healthcare professionals who are not familiar with Fabry disease. Please see our YouTube channel link on the home page.
  • We provide free access to selected medical publications from the medical publications section of our homepage. To access publications you must sign-up on the website according to our agreement with the publication providers to limit access to our community only rather than the general public. Anyone in the global Fabry community can sign-up (create an account) on our website.
  • Please subscribe to our newsletter in the “Connect with us” section of the homepage in the right-hand column. Every article of the newsletter may not apply to the international community but many articles will.
  • We encourage participation in our Faces of Fabry program, our medical events awareness program, and our remembrance program. Telling our story of serious medical events (kidney failure, dialysis, transplants, transient ischemic attacks and stroke, heart attacks, pacemaker/defibrillator implants, severe hearing loss/hearing aids/cochlear implants, etc) and premature loss of life at a relatively young age, as well as honoring and remembering people in our community is important regardless of where we reside around the world. These programs are essential components of Fabry disease awareness.

Please send photos and information to Jerry at This email address is being protected from spambots. You need JavaScript enabled to view it. .

The United States has two Fabry disease community support organizations. In addition to participating in National Fabry Disease Foundation programs, we encourage everyone to also participate in Fabry Support and Information Group (FSIG) programs to benefit from their many contributions to support individuals and families living with Fabry disease.

In summary:

Please join your local, regional or national support organizations. They need your support, your input, your feedback, and they need you to help strengthen your community voice in your country to deal with the important issues you face. Also, make use of the valuable resources from other support groups, clinics, industry, and other sources of Fabry disease information and assistance.

... and please participate in NFDF programs that may help you on your journey with Fabry disease as patients, family members, care providers, and supporters. Thank you! 

Last modified on Saturday, 16 June 2012 01:47
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