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Amyloidosis Support Groups

We are a phone call or email away!
24/7 TOLL FREE HELP/HOT LINE: 866-404-7539
OR EMAIL: Info@amyloidosissupport.org

Non-ATTR Hereditary


  • ApoA1 (Facebook Group)

  • Fibrinogen

  • Gelsolin (Facebook Group)

  • Lysosome (contact Info@AmyloidosisSupport.org )

  • Other (contact Info@AmyloidosisSupport.org )

  • Now Enrolling: REFLECTION Natural History Study for Adults with ALECT2 Amyloidosis

    Alnylam Pharmaceuticals has initiated their natural history study, REFLECTION, which is being conducted to observe and collect information about Leukocyte Chemotactic Factor 2 (ALECT2) Amyloidosis. This study will help researchers learn more about this rare disease, including how it affects the body over time, so that they can potentially develop better ways to diagnose and treat the condition.

    REFLECTION is enrolling up to 150 people who have been diagnosed with ALECT2 amyloidosis, confirmed by a kidney biopsy. If you havenít had a kidney biopsy and your doctor thinks your kidney disease may be caused by ALECT2, you may be able to have the biopsy done as part of this study.

    For more information, and to see if you can be referred to a participating clinical trial site, email clinicaltrials@alnylam.com.

    More:

    The REFLECTION natural history study is now being conducted in the United States. This study will help researchers learn more about this rare disease, including how it affects the body over time, so that they can potentially develop better ways to diagnose and treat the condition.

    • All study participants will be asked to allow the study team to review and collect data from their medical records, and to provide blood and urine samples.
    • Study participants who are not on dialysis and have not had a kidney transplant will be asked to complete study visits every 6 months for 4 years.
    • Transportation to and from study visits, or reimbursement for travel-related costs may also be provided to those who qualify.
    • Alnylam Pharmaceuticalís natural history study, REFLECTION, will help researchers learn more about this rare disease, including how it affects the body over time, so that they can potentially develop better ways to diagnose and treat the condition.


    Support Groups

    2019 CALENDAR


    ATTR Hereditary and Wild Type

    Non-ATTR Hereditary


    AZ/Southwest (Phoenix)

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    We invite our pharmaceutical liaisons to our support group meetings to help in our goal of educating and empowering our patients. The donations and/or grant received from these companies are unconditional, and the ASG does not endorse any one of their products over any other types of amyloidosis treatment. These treatments are mentioned at our meetings, on our website, and other electronic format for educational purposes. We encourage you to consult your amyloidosis professional when choosing a treatment plan.



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