April is Fabry Awareness Month. The purpose of the month is multi-faceted:
it helps to raise awareness of the disease amongst the general public
it shines a light on those who live with the condition and on the organisations that actively support the rare families who are living with Fabry
it provides education for the medical professionals who can diagnose and support those who have this life-affecting illness.
This year, the focus is #FabryHeroes, giving those of us who live with Fabry the chance to show our resilience and share our stories.
Vital Research For my part, I have searched the web for the latest active Fabry research campaigns. For me, these researchers are all #FabryHeroes because their work is making a real difference to the lives of all families with Fabry Disease. Using data from ClinicalTrials.gov (a fantastic site if you are interested in any form of clinical research) I’ve been able to find the latest active trials for Fabry, together with the respective URL if you would like more information. The information is summarised in the link below:
Elsewhere in the UK, the MPS Society is featuring a series of stories from both patients, clinicians and support staff. These articles are like gold dust to many of us who suffer with Fabry, letting us know that we are not alone on our journey, and signposting to resources that we may not have been aware of. I was particularly touched by Claire’s Story, which echoed some of my own journey and highlighted the importance for clinicians to take a step back and look at the big picture – particularly when risk factors are missing. These articles can be viewed at : MPS Society Fabry Awareness Month.
If you've got activity you'd like to see featured on this page please pop an email to me and I'll add it here. Also search for #FabryHeroesMonth and #FabryHeroes on social media platforms. Have a great month celebrating our #FabryHeroes - Fabry Disease can be hard to live with but it makes it more bearable to know that we are part of such a fabulous community.