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We are a community to support those impacted by AL Amyloidosis

Are you or someone you know affected by AL Amyloidosis?

What is AL Amyloidosis?

Amyloidosis (am-uh-loi-DO-sis) is a rare disease that occurs when an abnormal protein, called amyloid, builds up in your organs and interferes with their normal function. Amyloid isn’t normally found in the body, but it can be formed from several different types of protein. Organs that may be affected include the heart, kidneys, liver, spleen, nervous system and digestive tract.

 

There are several types of Amyloidosis. AL amyloidosis (immunoglobulin light chain amyloidosis) is the most common type of amyloidosis in developed countries, AL amyloidosis is also called primary amyloidosis. It usually affects the heart, kidneys, liver and nerves.

Here’s the truth. When it comes to medical research, we aren’t all included – not the way we should be, and not the way we can be.

People of Color make up 40 percent of the U.S. population, but there’s a real lack of diversity when it comes to people participating in genetic testing and clinical trials. That’s why certain medications don’t work for Black people, Hispanics and other People of Color, and that’s only scratching the surface. Let me put it this way: we’re underrepresented, which has only widened the number of healthcare disparities for us. That’s a problem, so let’s fix it.

About the AL Amyloidosis Community

We are a community that shares stories and supports anyone affected by AL Amyloidosis. We are here to be informative, relational, helpful, and supportive. By joining this community, you will find engaging content about preventative care, clinical research, and have the opportunity to connect with people like you.

What We Offer

  • Community Engagement
  • Clinical Research Opportunities
  • Educational Forums
  • Shared Perspectives

How to Get Started

  • 1

    Download & Install

    Download and install our app from Google Play or the Apple App Store.

  • 2

    Create Account / Login

    Open the app and enter your credentials to create an account.

  • 3

    Find Your Community

    Explore and connect with communities underneath the ‘Communities’ tab.

  • 4

    Get Involved

    Now you can start liking, commenting, sharing, or creating your own posts.

Frequently Asked Questions

Who can participate?

We are an inclusive community for everyone whose life has been impacted by AL Amyloidosis. You may be a patient, a parent, caregiver, or more. We want you to feel supported, informed, and cared for by our community.

Who created this community?

Our community was created for people who are passionate about AL Amyloidosis and want to contribute to research that could impact the development of new equitable medicines for the future. Our goal is to be included in all health conversations. Our goal is a healthier community that is actively taking control of its health.

How do I sign up?

Follow the link here to answer a few questions and join the community. After a few simple steps, you will be a member of the community.

Why join?

Joining this community is a smart decision to help you be included in the conversation and innovations surrounding AL Amyloidosis. We want to support you through providing insights on preventative care, information on clinical research programs, and access to financial resources.

What will I be asked to do?

As a community member, you can actively post your insights, questions, and any information that can be helpful and supportive to others or, you can also choose to just read, comment, and like posts.