Being diagnosed with hATTR amyloidosis can be overwhelming, frightening and hard to process. You may be asking yourself – where should I go from here? We have created this guide to help you and your family steer your next steps following diagnosis. It is important to know that you are not alone, and there are resources available to help you through this difficult time. We are here with you every step of the way.
Finding a Support Group
Connecting with other patients can be a great way to cope with your hATTR amyloidosis, since they:
• Understand the disease due to their first-hand experience
• Provide tips on finding the right doctor, managing daily activities with hATTR
amyloidosis and more
These social interactions can help foster growth and positive change through mutual support.
hATTR amyloidosis support groups host local meetings for patients and their families. They also provide educational resources, such as:
• Information on finding treatment centers and clinical trials
• Personal and inspirational blogs
• Information about local advocacy or fundraising events