Tools and wisdom rooted in our families. The #hATTRNextGen® Resource Hub brings together educational tools, support organizations, and culturally resonant resources to help individuals and families better understand hereditary ATTR amyloidosis. These materials support conversations about family health history, genetic risk, and navigating care.
Resource Hub
This resource links to ClinicalTrials.gov, a public research database.
Eligibility varies by study. Talk with your clinician about whether a trial may be right for you..
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Awareness
Hereditary Amyloidosis v122i Overview
Hereditary Amyloidosis v122i Genetic Overview
Hereditary Amyloidosis Free Genetic Testing Resources
Faith and Health
Faith & Health
Faith, Anxiety & Health
Hereditary Amyloidosis Free Genetic Testing Resources
Faith & Self-Advocacy
Self-Advocacy
What is Self-Advocacy
Self-Advocacy in Practice
Hereditary Amyloidosis Free Genetic Testing Resources
NextGen Roadmap
What Do I Do? My family member has hATTR
This Resource Hub will continue to expand with tools rooted in family, faith and self advocacy….
Hereditary Amyloidosis Free Genetic Testing Resources
Finding Support and Community
Living with hereditary ATTR amyloidosis, carrying a genetic variant, or supporting a loved one through health uncertainty can feel overwhelming.
Many individuals and families benefit from connecting with support communities, educational programs, patient networks, and online communities focused on hereditary amyloidosis awareness and education.
Across the amyloidosis community, different organizations and groups may offer resources such as:
• patient education programs that explain hereditary amyloidosis and genetic risk
• support groups and peer communities for patients, caregivers, gene carriers, and families
• webinars and educational events featuring clinicians and researchers
• advocacy efforts that work to improve awareness and diagnosis
• updates about research and clinical trials
These types of resources can help individuals and families learn from others navigating similar experiences while staying informed about hereditary ATTR amyloidosis.
Support can also come from places closer to home. For many families, faith communities, family networks, and trusted community leaders play an important role when facing illness, caregiving, and uncertainty.
The #hATTRNextGen Resource Hub focuses on providing culturally grounded educational tools and directories that help individuals and families explore available resources and continue learning.
The hub also highlights educational materials about hereditary amyloidosis for Black families, particularly those navigating the V122I genetic variant that is more commonly found in people with West African ancestry.
Conversations and shared learning also take place through #hATTRNextGen social platforms, where individuals share stories, ask questions, and encourage greater awareness about family health history and hereditary amyloidosis.
Some of the resources below also connect individuals with mental health professionals who understand the intersection of culture, identity, chronic illness, and caregiving.
Caring for Your Mind and Spirit
Living with hereditary amyloidosis, carrying a genetic variant, or supporting a loved one through health uncertainty can take an emotional toll. These directories may help you find therapists who understand the intersection of culture, identity, and health.
#hATTRNextGen® does not provide medical or mental health services and does not endorse specific providers. These directories are shared for informational purposes to help individuals explore support options.
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Inclusive Therapists
Directory connecting people with culturally responsive therapists. Filters include chronic illness, disability, caregiving support, identity, and life experiences.
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Therapy For Black Girls
A trusted directory created to help Black women and girls connect with licensed therapists who understand the importance of culture, identity, and lived experience in mental health care.
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Melanin & Mental Health
A directory connecting individuals and families with therapists of color who understand the impact of culture and community on mental health and overall wellbeing.