5 Top Support Organizations for ATTR-CM
- Here's a breakdown of the resources and support offered by the organizations mentioned in the text, specifically for people with ATTR-CM (and their caregivers):
- * Genetic Data: Provides information on eligibility for free genetic counseling and testing to determine if the condition is genetic.
- * Education: Regular webinars on clinical trials and coping with ATTR-CM.
Here’s a breakdown of the resources and support offered by the organizations mentioned in the text, specifically for people with ATTR-CM (and their caregivers):
1. Amyloidosis Support Groups:
* Genetic Data: Provides information on eligibility for free genetic counseling and testing to determine if the condition is genetic.
* Financial Assistance: Compiles pharmaceutical assistance programs and connects users to foundations for help with medication costs.
* In-Person Support: Hosts in-person meetings in over 30 U.S. cities and a bi-annual conference for patients and doctors.
* Online Resources:
* YouTube Channel: Webinars available on https://www.youtube.com/c/AmyloidosisSupportGroups
* Facebook Group: Dedicated to ATTR-CM caregivers: https://www.facebook.com/groups/2608016656169995/
* Contact: info@amyloidosissupport.org
2. Amyloidosis Foundation:
* Education: Regular webinars on clinical trials and coping with ATTR-CM.
* Empowerment & Awareness: Focuses on empowering patients, educating medical professionals, raising awareness for early diagnosis, and funding research.
* Resources: Information on support groups, treatment centers, and resources for veterans.
* Advocacy: Opportunities to get involved through matching gifts,events,and Facebook fundraisers.
* Stay Updated: Sign up for their newsletter: https://amyloidosis.org/#newsletter
* Website: https://amyloidosis.org/
3. Amyloidosis Research Consortium:
* research & Treatment Advancement: Works with partners to promote research and improve treatment for ATTR-CM.
* Diagnosis Support: Builds programs to help doctors diagnose ATTR-CM quickly and accurately.
* Advocacy & Accessibility: Engages with policymakers to improve treatment access.
* Resources:
* conferences, Webinars, Fundraisers: Hosts various events.
* My Amyloidosis Pathfinder: Tool to find personalized treatment centers and clinical trials: https://arci.org/patients-and-caregivers/treatment-centers-clinical-trials/
* Website: https://arci.org/about-arc/
Key takeaway: These organizations offer a extensive range of support, from practical assistance (financial aid, finding treatment centers) to emotional support (support groups, caregiver resources) and advocacy for better research and access to care.