0Pledges Made
PLEDGE TO SEE YOUR FEMALE FABRY PATIENTS.
Become part of the movement. Click on a square to make your pledge. Every pledge we receive brings us closer to seeing female Fabry patients differently.
How do I make my pledge?
Hover over the image of the woman and select a square. You will then be given the option to take the pledge. Each pledge will help reveal more of her, bringing us closer to our goal.
THANK YOUR FOR TAKING THE PLEDGE.
There is still work to be done. Share a link and help spread the word. Every pledge is a commitment to seeing female Fabry patients differently.
Copy LinkWill you see your female Fabry patients differently?
For a long time, women were only seen as genetic carriers of Fabry disease.1─3 But they are patients, too.1─3 We are asking you to pledge to change the way you see your female Fabry patients.
It’s time to rethink women as patients at risk. Regular monitoring can help ensure those eligible for treatment don’t miss out.4─7
70%
of the 1077 women enrolled in a study of the global Fabry Registry* had signs or symptoms of Fabry disease8
20%
of the 1077 women enrolled in a study of the global Fabry Registry* experienced major cerebrovascular, cardiac, or renal events8
84%
of women have a positive family history of Fabry disease, yet delays in diagnosis of 18 years persist8
33-77%
of female Fabry disease patients are untreated despite fulfilling criteria for enzyme replacement therapy (ERT) initiation, studies suggest6,7
*The Fabry Registry is an ongoing, global observational database sponsored by Genzyme that tracks natural history and outcomes of patients with Fabry disease.7
All patients with a confirmed diagnosis of Fabry disease are eligible for enrollment irrespective of their treatment status and regardless of symptomology.6,7
Meet some of the women helping us change how we see the female Fabry experience.
For too long, the true impact of Fabry disease on female patients has been widely underestimated. Despite the emotional and physical burden they face, these women refuse to let Fabry XX them out of life.
Will you take another look at your female Fabry patients?
Women with Fabry disease are patients at risk, not only carriers.1─3 Regularly monitoring your female Fabry disease patients can help make sure that those eligible for treatment don’t miss out.4-7
Take the pledgeReferences
- Deegan PB et al. J Med Genet 2006; 43(4): 347–352.
- Germain DP et al. Mol Genet Metab 2019; 126(3): 224–235.
- Germain DP. Orphanet J Rare Dis 2010; 5: 30.
- Ortiz A et al. Mol Genet Metab 2018; 123(4): 416–427.
- Wanner C et al. 2018 Mol Genet Metab 2018; 124(3): 189–203.
- Barba-Romero MA and Pintos-Morell G. Int J Mol Sci 2016; 17(12): 1965.
- Lenders M et al. Orphanet J Rare Dis 2016; 11(1): 88.
- Wilcox WR et al. Mol Genet Metab 2008; 93(2): 112–28.
- Fabry Disease Registry & Pregnancy Sub-registry. Available at: https://www.clinicaltrials.gov/ct2/show/NCT00196742. Accessed: October 2021.