Category: Patients

An amyloidosis diagnosis brings a rush of questions. Where should I go? Who truly understands this disease? Are there clinical trials for someone like me? For too many patients and caregivers, these questions can feel overwhelming, and the path forward can seem unclear.

That’s why the Amyloidosis Research Consortium (ARC) designed My Amyloidosis Pathfinder (MAP) in 2017. After hearing from both patients and physicians that navigating amyloidosis care and clinical trials was far too complicated. Even doctors were struggling with clinicaltrials.gov, the database of all registered clinical studies, which is comprehensive but difficult to search, especially for rare diseases. And most patients weren’t hearing about opportunities at all.

Today, MAP is a free, easy-to-use tool that brings clarity, simplicity, and possibilities directly to you.

Try MAP →

Why MAP Matters

Before MAP existed, ARC conducted an extensive patient survey in 2017 to understand the biggest barriers people faced. The findings made it clear there was a major unmet need:

• 49% said they had little to no access to information about clinical trials that may apply to them.
• 73% reported feeling unsure how to enroll in a clinical trial.
• 45% said they would consider participating if they were well informed.
• 73% believed clinical trial participation could enhance their overall care.

These results highlighted a real and urgent need for better access to information and were the direct driving force behind creating MAP.

There’s another reason clinical trial awareness matters in a rare disease like amyloidosis; without patient participation in clinical trials, new therapies simply cannot be developed. Slow enrollment can also delay promising treatments from reaching the people who need them most.

To move this field forward, patients must have clear, timely access to information. MAP makes that possible.

“I used to feel like I was searching in the dark. MAP was the first time I could see real options and that changed everything for me.”

— Amyloidosis Patient

 

Clear, Personalized Paths to Expert Care

Finding an amyloidosis center is rarely simple. Geography, organ involvement, disease type, and specialists all shape what “the right care” looks like.

MAP lets you easily explore and compare expert centers across the U.S. and Canada side by side, in one place. Each center profile highlights:

• Types of amyloidosis treated
• Specialists available (cardiology, hematology, neurology, and more)
• Diagnostic services and transplant programs
• Research involvement
• Patient volume and program experience

Patients and families can finally see how programs differ and which ones align with their specific needs. 

You shouldn’t have to guess your way to the right care team. MAP brings that information directly to you.

Patient-Friendly Clinical Trial Information

MAP also simplifies one of the most intimidating parts of amyloidosis care: clinical trials. Instead of technical jargon or confusing eligibility pages, MAP provides clear, patient-friendly summaries that answer real questions:

• What is the trial trying to learn?
• Who might be eligible?
• Where is it being offered?
• Who do I contact?

All listings are reviewed with research partners to ensure accuracy and clarity. Once you create a MAP profile, when new trials open that may be a match for you, MAP will also notify you.

“Every patient deserves access to the latest science. MAP was built to make sure no one misses an opportunity simply because they didn’t know where to look.”

— Amyloidosis Research Consortium

 

Ongoing, Personalized Updates

After signing up, MAP continues working for you. You can opt in to receive personalized email alerts when new trials or center updates align with your diagnosis, type, or treatment history. As your medical situation changes, updating your MAP profile ensures these alerts stay relevant. It’s an easy, powerful way to stay connected to every opportunity that might improve your care without the stress of constantly searching.

Explore MAP Today

My Amyloidosis Pathfinder was created for patients, families, and caregivers. They deserve clarity, choice, and confidence. Whether you’re newly diagnosed or exploring new options, MAP can help you take the next step.

Visit MyAmyloidosisPathfinder.org and see what becomes possible when the right information is finally within reach.