Resources
Resources
Real answers. Real support. All in one place.
Clarifying Our Focus: Lupus and Hereditary Amyloidosis
Clarifying Our Focus: Lupus and Hereditary Amyloidosis
At The Lupus Rainbow, we are proud to advocate for individuals affected by Lupus and Hereditary Amyloidosis. It is important to clarify that these are two separate conditions. While it is possible for someone to live with both, they are not related in cause, progression, or treatment.
Our inclusion of both conditions reflects the lived experience of our founder and our commitment to raising awareness for multiple rare diseases. Each focus area on our site — from Neuropsychiatric Lupus (NPSLE) to Hereditary Amyloidosis — is treated with the depth and distinction it deserves.
We believe education and clarity are key to empowerment.
Lupus Organizations
Lupus Organizations
Whether you're newly diagnosed or navigating the complexities of Lupus long-term, these trusted organizations offer national-level support, education, research funding, and advocacy tools to help you manage your journey and connect with others who understand.
Lupus Foundation of America (LFA)
Lupus and Allied Diseases Association (LADA)
Neuropsychiatric Lupus (NPSLE) Research & Info
Neuropsychiatric Lupus (NPSLE) Research & Info
NPSLE is still widely misunderstood — even in the medical world. These resources highlight the latest research on how Lupus affects the brain, helping you stay informed and empowered with real science behind the symptoms.
NPSLE Research (Dr. Carla Cuda)
PubMed Central – NPSLE Studies
Transplant Resources
Transplant Resources
Lupus can lead to serious organ complications, especially in the kidneys, heart, and lungs. These resources offer education about transplant options, donor programs, and how to protect your organ health throughout your Lupus and/or Amyloidosis journey.
The Transplant Journey
The American Living Organ Donor Fund
Amyloidosis Resources
Amyloidosis Resources
Amyloidosis is a rare but serious condition caused by the buildup of abnormal proteins called amyloids. It can affect organs like the heart, kidneys, and nervous system. These resources help you learn about diagnosis, types of amyloidosis (like Hereditary, ATTR and AL), and where to find trusted support and research-based guidance.
Mackenzie’s Mission
Clinical Trials & Research Participation
Clinical Trials & Research Participation
Looking for new treatment options? These platforms connect patients with current clinical trials, giving you the chance to contribute to groundbreaking research and possibly access new therapies before they reach the public.
ClinicalTrials.gov
Mental Health & Emotional Support
Mental Health & Emotional Support
Healing is physical — but it’s also emotional and mental. Jennifer shares real reflections from her Lupus journey to encourage others through faith, honesty, and hope. Sometimes, a story is the best medicine.
Jennifer’s Blog: Real Talk by Jennifer
Always Thankful 4 Motivation
Bonus Resources
Bonus Resources
Explore exclusive tools created by our team — including downloadable guides, personal reflection journals, and ways to share your own story with our community.