Fabry Awareness Month focuses on community, strength, and support
Groups worldwide share stories and resources to build awareness
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April is Fabry Awareness Month, and advocates around the world are working to uplift and connect the community, increase awareness about Fabry disease, and support fundraising efforts.
For this year’s awareness campaign, the Fabry International Network (FIN) has selected the theme: “Living with Fabry, Your Unique Strength.”
Global campaign highlights strength in living with Fabry
According to FIN’s website, this theme was selected because “Fabry is not only a diagnosis or a list of symptoms. It’s a life. A rhythm. A constant process of adapting, advocating, coping, resting, showing up, and starting again. And within that lived experience, there is often strength not always loud or obvious, but real.”
Throughout the month, FIN will share stories from people around the world living with Fabry disease. There will be “moments of honesty, resilience, vulnerability, humor, fatigue, hope, and everything in between,” according to FIN. “These voices offer something medical facts alone can’t: insight into what it truly means to live with Fabry and the many different ways people carry it.”
Fabry disease is a genetic disorder that can affect the body in a range of ways — common symptoms include fatigue, pain, kidney problems, and heart issues. Because the disorder is relatively rare, people with Fabry often feel isolated and misunderstood, according to the MPS Society, a U.K.-based organization focused on Fabry disease and related genetic conditions.
During awareness month, the MPS Society is encouraging people to get involved and support the Fabry community. “Our members face so many challenges because of their symptoms and we are here to make life as easy as possible so they can live life to their full potential,” according to the society’s website, which provides information and support for people living with Fabry disease.
Community encouraged to connect and share experiences
In light of these challenges, the MPS Society is calling on the community to raise their voices this month by sharing their stories, so that people with Fabry disease can connect with each other and know that they are not alone.
Community members can spread the word on social media using the hashtags #FabryAwarenessMonth and #fabrymatters.
People can also support those living with Fabry by making a donation.
For advocates in the U.S. who want to get up and moving this month, the Fabry Support & Information Group (FSIG) is running a virtual run/walk fundraiser throughout April, with registration available online.
