Living with Amyloidosis/Living with Amyloidosis

World Amyloidosis Day: Awareness and Support

Written by Torrey Kim

Posted on June 5, 2026

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Key Takeaways

World Amyloidosis Day is observed every October 26 to bring attention to a condition that many people, including medical professionals, may not know much about.

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If the word “amyloidosis” was new to you when you were diagnosed, you’re not alone. In fact, even among medical professionals, there is a lack of awareness about amyloidosis. World Amyloidosis Day offers the amyloidosis community a way to share information about this often-overlooked condition.

Here’s what you need to know to raise awareness, advocate, and build community for World Amyloidosis Day in October.

What Is World Amyloidosis Day?

On October 26 each year, activities for World Amyloidosis Day are organized by the Amyloidosis Alliance. Representatives from across four continents come together to raise awareness for amyloidosis.

World Amyloidosis Day isn’t just for healthcare professionals. The event’s goal is to connect people living with amyloidosis (and their caregivers) with health experts, scientists, pharmaceutical firms, and the general public.

Events for October 26 take place across the world. But you can also raise awareness in your local community, either in person or through online events.

Why Is Amyloidosis Awareness Important?

A lack of awareness about amyloidosis can result in missed diagnoses and delayed care. Reports show that the average time to diagnose amyloidosis worldwide is about four years.

Since others can’t see the misfolded proteins that affect your body with amyloidosis, it may feel like an invisible illness. This can make people mistakenly believe that amyloidosis isn’t serious or doesn’t cause major problems.

“There does need to be more awareness of this disease,” one MyAmyloidosisTeam member said. “More people have it than I currently thought. There has to be more awareness, better treatment options, and efforts to improve healthcare providers’ approach to managing this disease.”

Another member said, “There is hope, yet we need more awareness. Too many patients are misdiagnosed too late.”

Raising amyloidosis awareness can also make you feel less alone. Some people find that having amyloidosis can affect their mental health. If other people in your community know what you’re going through, they can better support you.

“I urge those of us that have this condition to talk to others about it,” one member said. “Tell family members, friends, neighbors. You might be doing someone else a lifesaving favor.”

How To Raise Awareness Around Amyloidosis

If you want to join in and help raise awareness of amyloidosis, there are many things you can do.

Share Your Story

Sharing your own story is one of the best ways to raise awareness. You can write a social media post, talk to people close to you, or organize an event where you speak.

Sharing your story puts a face to amyloidosis. It can also help people living with this rare disease feel less alone.

Consider Participating in Events

The Amyloidosis Alliance creates events across the world every year on October 26. But you can also create your own event near you.

For example, you can bring in a speaker for a lunch-and-learn to educate people or share your own story. A fundraiser is another option that offers people the chance to pitch in if they don’t have time for an event.

You can even set up an information table at a local event to chat with people who pass by. Choose the type of event that best matches your personality, physical abilities, time constraints, and community.

Share Across Social Media

Sharing on social media is an easy way to pass along amyloidosis information and join the worldwide campaign. Use trusted sources to offer information that will better help people understand this complex disease.

To support World Amyloidosis Day, you can use the hashtag #BetheLink. You can also share infographics and other resources from the Amyloidosis Alliance’s online library.

How To Show Support for Someone Living With Amyloidosis

Even if you aren’t living with amyloidosis yourself, there are things you can do to support people in your life who are. You might try:

Learning more about amyloidosis — Understanding the condition can help you better understand what someone is going through, especially if their diagnosis is new or if you haven’t taken the time to learn about it before.
Understanding and validating symptoms — Symptoms such as fatigue or weakness can be invisible. Believing someone can go a long way toward making them feel supported.
Taking time to help in practical ways — If you know someone with amyloidosis, daily tasks may be hard for them. Offering to cook healthy meals or helping in other ways may help improve their quality of life.
Remembering they aren’t only living with amyloidosis in October — You can learn more about this condition and help educate others throughout the year.

How To Keep Momentum Beyond Awareness Day

Amyloidosis awareness shouldn’t stop after October 26. Learning, sharing reliable information, and supporting the amyloidosis community can make a difference throughout the year.

Building community can also help reduce loneliness, which can happen at any time. Advocacy has no end date — there will always be ways to remind people that amyloidosis matters and deserves support.