Let's Share Resources
When it comes to rare diseases, it can be a small world once you start to meet others living with the condition. Use this forum to share resources (books, organizations, podcasts, articles) that have helped you in your journey.
Thank you for adding this forum. I am glad that my dad’s journey to some extent is different from mine with this disease. Same in that with friends and family it is not something people have heard of much less understand and want to talk about. Different in that there are organizations and communities like this one that do.
Some others I have found helpful during my families’ journey that have a multitude of resources for patients, families and caregivers.
Amyloidosis Support Group
Amyloidosis Research Consortium
Amyloidosis Foundation
Mackenzie’s Mission
To name just a few.
