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Thursday, 14 June 2012 23:29

Welcome to Our Mothership

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Welcome to our website affectionately referred to as our Mothership, the hub of our education and information programs! We hope you enjoy reading about what is happening in the Fabry disease community and are able to participate in our many information sharing programs. Our website was designed to provide you with more opportunities to receive and to share valuable information and resources within the Fabry disease community.

In addition to telling you about what’s happening in the Fabry community from our perspective and providing Fabry disease resources, we have added website features to give each sector (individuals with Fabry disease, family members, friends, physicians, researchers, clinic staff, and others in our community an opportunity to share information and announcements.

We still have many sections to transfer from the old website and many items to update. Thank you for your patience!

New and improved website features include:

  • A community announcements section where we will post announcements from all sectors of the Fabry disease community as you provide them. Please tell us about important individual/family and organization news, events, programs, and studies you would like to share with the community.
  • Easier access to our social networking sites and newsletter sign-up in the “Connect With Us” section in the right column of the website. We would like everyone to re-subscribe to our newsletter using the new form as we improve our services. Please subscribe again even if you are already subscribed so you don’t miss future newsletters.
  • An improved calendar display to announce meetings and events around the country. We would like to post all Fabry related meetings and events to ensure everyone has an opportunity to attend. Please send save-the-date announcements and meeting invitations as far in advance as possible.
  • A section for people with Fabry disease and our family members to tell the stories of our journeys with Fabry disease.
  • A section called “Why is early diagnosis of Fabry disease so important?” We need to highlight the seriousness of our disease to get the attention and support we need to cause positive change for individuals with Fabry disease and our families. Please send us photos and information to This email address is being protected from spambots. You need JavaScript enabled to view it. about the age you suffered from serious medical events such as kidney failure, dialysis, transplants, transient ischemic attacks and strokes, heart attacks, pacemaker/defibrillator implants, severe hearing loss/hearing aids/cochlear implants, etc.
  • A section of the website called “Remembering Family and Friends” where we can honor and remember people who have passed away from Fabry disease often at a relatively young age. Please provide the name and dates of birth and death of family members and friends who have passed away directly or indirectly from Fabry disease. If you are able to send a photo and a tribute or obituary that would be nice also but not required. At our September camp and conference we will hold an event to honor and remember those who have passed away. The event will include reading the names of each family member or friend we are honoring. Please participate by submitting names!
  • Other special sections of the home page for major programs such as our annual Charles Kleinschmidt Fabry Family Weekend Camp, our Family Assistance Program, and others. Our annual conference and camp is usually held on September.
  • Print and email links on every website page plus an integrated comment feature so you can easily make comments about website content when you are logged-in. Please share website information and programs widely and provide feedback to help us improve our programs and services.

Some sections of the website such as the main articles at the top of the home page, and the articles in the "What's Happening in the Fabry Community" and "Why Early Diagnosis of Fabry Disease is so Important" sections have left and right scroll buttons to view all of the available articles.

Many features of the site are still being updated such as the find a doctor database, the Fabry population map, the Frequently Asked Questions, and many other website content areas. We’ll keep you posted through our various news channels such as our website announcements, and face book and Twitter posts as we make more progress on these items.

We will also continue to develop new programs and services, to share information, and to facilitate community interaction that strengthens our community and increases our ability to help people with Fabry disease and our families. We’re better together!

Last modified on Wednesday, 20 March 2013 10:08
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