Sign up for info

Soaring
new possibilities
in Fabry disease

Let's lighten the load for the Fabry community—and explore how to help those who suffer from daily symptoms and long-term challenges. Together, we can unleash new potential in how we face Fabry disease.

The hidden impact of Fabry disease

If you have Fabry disease, or a loved one does, you might be experiencing daily symptoms—symptoms you may have come to accept over time and think of as unavoidable.

Fabry disease impacts you or your loved one—even when it’s considered under control.

Daily life

jagged shapes representing pain

Pain

image of stomach

Gastrointestinal
issues

Long-term challenges

image of kidneys

Kidney

image of heart

Heart

image of brain

Brain

Fabry is a progressive disease: one that gets worse over time. Current treatments are invaluable for many people with Fabry disease, but some patients still experience the symptoms and long-term complications of the disease despite their treatments.

What is Fabry disease?

Fabry disease is an inherited condition that impacts both children and adults. It can impact different people in different ways, but it all starts with one thing: an enzyme.

How the lack of one enzyme can lead to many issues

image of alpha-Gal A and fat inside a cell

We all have enzymes inside our bodies to help our cells work.

alpha-Gal A symbol

When someone has Fabry disease, their body can’t produce enough working copies of an enzyme called
alpha-Gal A.*

healthy cell with alpha-Gal A, and Fabry cell without

Normally, alpha-Gal A breaks down a type of fat that provides energy to the body. But without alpha-Gal A doing its job, this fat can build up and damage cells throughout the body.

number 4 and painful-looking kidneys, brain, and heart

Damaged cells lead to the signs and symptoms of Fabry disease.

*alpha-Gal A, alpha-galactosidase.

webinar icon

Rethink Fabry Webinar Series

DESIGNED FOR PATIENTS BY PATIENTS

If you or someone you care for has Fabry, you don't want to miss the discussions in this free webinar series.

After receiving the diagnosis of Fabry disease, we may be surprised and uninformed and turn to the internet for information. While the information is helpful, at times it may not be relatable and can seem ominous and scary.

The topics in this Webinar Series will provide information and guidance that patients may need along their Fabry journey. Each webinar features a Fabry expert who will help you learn more and a Fabry patient who will share their experience, strength, and hope to help empower you.

These webinars are intended for US residents only. Register now to receive more information on this free series.

calendar icon

NOVEMBER 2020

Know Fabry, Know Surprises

Understanding Fabry is the beginning of the journey. As we continue to walk side by side with Fabry disease, we often face surprises. This webinar will help you understand:

  • What Fabry disease is and is not
  • The long-term challenges you may face
  • How your empowerment can help you take positive actions

You will hear from a genetic counselor and a patient with Fabry disease who will share their experience, strength, and hope to guide you forward.

As Fabry patients, we may think that we are okay when we are not. Being aware of what may or may not happen is pivotal to how we live with Fabry. This webinar will help you:

  • Understand some of the common symptoms and strategies to manage them
  • Review the possible challenges you may encounter
  • Empower you to become your own advocate with your healthcare team

After receiving the diagnosis of Fabry disease, we often feel shocked. We may find ourselves angry and often hopeless. We live in silence. There is hope. This webinar will help you:

  • Address and manage “psychosocial feelings” that many people with Fabry experience
  • Understand the importance of building a support network
  • Gain practical guidance on how to get the support you need for living with Fabry

Progress leads to possibilities

We’re making progress by creating a greater awareness of what people with Fabry disease are facing—what their daily lives look like, how they feel, and what can be done about it.

Awareness and action can create better possibilities for people with Fabry disease.

woman with cellphone
illuminated lightbulb

More proactive care
Addressing the daily symptoms and long-term damage

clipboard with copy

More informed care
Helping to deal with the limitations of current management of the disease

heart and plus sign

More advanced care
Searching for strategies to recognize and care for Fabry disease earlier in its course

By rethinking our plan today, we may be able to change outcomes tomorrow.

Make the most of your doctor appointments

Learn more about discussing Fabry disease with your care team.

Download this resource to help facilitate conversations with you and your Fabry care team. This informative guide can help you:

  • Understand the risks of disease progression
  • Set up your healthcare team of core doctors and an extended team of specialists, who can help with more specific issues
  • Learn how to actively participate and take the lead in better managing your Fabry
download pdf
sea gulls flying

Stay informed on how we can fly higher above Fabry

The Fabry community is ready to demand more.

Sign up for updates and the Webinar Series below. You’ll receive important information that can help you rethink Fabry disease—and rediscover what’s possible.

*Required fields

This program is intended for U.S. residents only. Are you a U.S. resident?*

Email address is required.
First name is required.

Sex
Fabry disease affects males and females differently.


Please tell us a little more about yourself or the person with Fabry you care for.

These responses are optional but will help us provide you with the most useful and appropriate information and resources for managing Fabry disease.

Have you or has someone you care for been diagnosed with Fabry disease?

Please answer the following as they apply to the person with Fabry disease.

Which best describes your current approach to treating your Fabry disease?

How would you describe the current status of your Fabry disease? [Check all that apply.]

Which best describes your current experience treating Fabry disease by infusion? [Check all that apply.]

How strongly do you agree or disagree with this statement?
“I am comfortable with the time and effort I devote to treating my Fabry disease and receiving infusions.”

Which best describes your current experience treating Fabry disease with oral medication?


We will not sell or transfer your name, address, or any other information to any other party for their marketing use. You may unsubscribe at any time by following the instructions in any communication you receive from us.