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Were you diagnosed with Cerebral Amyloid Angiopathy (CAA)?
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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

***Register Here For The Biennial ATTR (Familial) Meeting October 25,26.27, 2019***

Familial(Hereditary) and Wild Type TTR (Senile) as well as other lesser known types.

Book Your Hotel Here in the AMY block
Do you have special needs (fridge for insulin, wheelchair access)? If so, please call your reservation in to 888-453-6943. Give them your “AMY” code and let them know what you need. If you have any problems, please let us know.
If you will be requiring a special accessible shuttle, please let us know: Info@AmyloidosisSupport.org
Shuttle Info (PDF)
Driving Directions (PDF)


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 haven’t 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 Pharmaceutical’s 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


    Arizona (Phoenix)

    California (Los Angeles)

    California (San Diego)

    Carolinas

    Chicago

    Colorado (Denver)

    Detroit

    Florida (Jacksonville)

    Florida (Miami)

    Florida (Tampa)

    Georgia/Alabama

    Indianapolis

    Kansas City

    Louisiana

    Maryland (Baltimore/D.C.)

    Maryland (Hagerstown)

    Massachusetts (Boston)

    Minnesota

    Nevada (Las Vegas)

    New York City

    New York (Rochester)

    Ohio (OSU)

    Philadelphia

    Portland

    St. Louis

    Texas (Dallas)

    Texas (Houston)

    Utah

    Virginia

    Washington (Seattle)

    Washington (Spokane)


    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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