Support Groups for Families Affected by Fabry Disease

Support Groups for Families Affected by Fabry Disease
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Fabry disease is a rare genetic disorder characterized by the accumulation of a type of fat called globotriaosylceramide (Gb3 or GL-3) inside cells.

Its symptoms, such as muscle weakness, kidney dysfunction, heart disease, Fabry crises, and various skin and eye problems, can be quite stressful to deal with, and patients and caregivers often need a lot of support.

Here are a few suggestions for finding support groups and opportunities to network with others interested in Fabry disease care, research, and treatments.

Check out Fabry disease support organizations

Several non-profit groups provide support and resources for patients and families affected by Fabry disease. Some of these are:

Connecting to these groups will help you stay up-to-date on the latest in Fabry disease research and therapies, as well as find new ways to network and share experiences with other patients and caregivers, researchers, and healthcare professionals with expertise in this disease.

Check out Fabry support resources for your country

Many support organizations across the world are part of the Fabry International Network. You can find a list of support organizations by country on this page and enroll with them.

Make use of resources offered by pharmas

Pharmaceutical companies often have dedicated support pages for the specific medications they make. These support pages not only provide a wealth of information about the disease and the medication itself, but often allow you to access personalized support throughout the course of the therapy.

For example, Sanofi Genzyme, makers of an enzyme replacement therapy (ERT) called Fabrazyme, runs a dedicated website for Fabry disease patients called Discover Fabry. Discover Fabry is a resource with information for both patients and healthcare professionals. It also gives you access to Sanofi’s CareConnect Personalized Support Services that provide you a dedicated patient education liaison and case manager to help with information pertaining to the disease, therapy, or financial assistance.

Enroll in the Fabry disease registry

The Fabry disease registry (NCT00196742) is an international and multi-center observational study, sponsored by Sanofi Genzyme, to track clinical outcomes in Fabry patients irrespective of treatment status. Ask your doctor to enroll you in the registry, whose data contribute to a greater understanding of Fabry disease, its care, and the development of future therapies.

Keep a tab on support groups on social media

Many of the Fabry disease support organizations listed above can also be found on social media platforms such as Facebook, Twitter, and YouTube. Make sure you follow them on these platforms to get alerts about breaking developments, find local support groups, and share personal experiences with others.

Subscribe to our website

Our Fabry Disease News website lets you stay abreast of all developments in the field of Fabry disease. Our site offers details about the disease, health insights, approved treatment options, experimental therapies being developed, the latest news into ongoing research, information about ongoing and upcoming clinical trials, and more.

 

Last updated: Feb. 13, 2020

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Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.

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