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Featured News

Seven Ways to Advocate for Your Health

January 25, 2019

If you have a rare disease it’s likely you’ll encounter medical professionals who have never heard of your condition. Therefore, it’s a good idea to always be an active member of your health care team. Guest blogger Lori Grover shares seven important ways you can self-advocate.

Filed Under: Featured News, Uncategorized Tagged With: advocacy, amyloid assassin, amyloidosis, amyloidosis diagnosis, amyloidosis treatment, self-advocacy

VOICES of Amyloidosis

January 9, 2019

VOICES of Amyloidosis is a five-part campaign intended to give voice to those impacted by the disease. Each person in this video, which includes patients, caregivers, and expert doctors, have a story to tell in their own unedited words. You will feel their emotions and share their hope for the future.

Filed Under: Featured News, Mission News, What Is Amyloidosis Tagged With: amyloidosis, amyloidosis news, amyloidosis treatment, caregiver

2018: Thanks for a Great Year!

January 4, 2019

What a great first full year! We are proud to say we exceeded our goals for the year, thanks to YOU, our wonderful supporters. Thank you! Please enjoy reading our 2018 Report Card on how your support made a difference.

Filed Under: Featured News, Mission News Tagged With: amyloidosis, amyloidosis news

Clinical Trials 101

October 17, 2018

Clinical research is simply medical research involving people. There are two types, clinical studies (aka observational studies) and clinical trials. In this blog, we explore clinical trials and the basics of what you need to know.

Filed Under: Featured News, What Is Amyloidosis Tagged With: amyloidosis, amyloidosis clinical trials, amyloidosis research, amyloidosis research consortium, Boston medical center, clinical trials, mayo clinic, my amyloidosis pathfinder, what is a clinical trial

Amyloidosis ICD Diagnosis Codes

September 29, 2018

What are diagnosis codes and what are they used for? Here’s a brief summary.

Filed Under: Featured News, What Is Amyloidosis Tagged With: amyloidosis, amyloidosis diagnosis, Amyloidosis ICD Codes, diagnosing amyloidosis, ICD Diagnosis Codes, ICD-10-CM Diagnosis Codes

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