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Amyloidosis Support Groups

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IMPORTANT CLINICAL TRIALS


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Clinical Trials – USA


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Hot Alnylam News – Expanded Access
hATTR– All get the drug- No placebo
To qualify for below you must have ATTR w/polyneuropathy
Expanded Access Protocol of Patisiran for Patients With Hereditary ATTR Amyloidosis (hATTR)
Call your amyloid doctor to see when this will be available in your area. Should open at many centers soon.
Follow the trial on clinicaltrials.gov to see added locations.
You can remain on Diflunisal (if you are already on it) with the above trial

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--AL--

AL(Primary amyloidosis) Clinical Trials

Prothena Corp AL- RAIN STUDY

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Daratumumab for the Treatment of Patients With AL Amyloidosis

Trial of Venetoclax (ABT-199) and Dexamethasone for Relapsed or Refractory Systemic AL Amyloidosis

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--ATTR--

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ATTRmt or ( hereditary amyloidosis) Clinical Trials

ATTRwt (Wild Type or Senile amyloidosis) Clinical Trials

ATTR Wild Type AND Hereditary

Diflunisal – Results

  • Repurposing Diflunisal for Familial Amyloid Polyneuropathy

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    -AA-

    (for secondary amyloidosis)

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    For all amyloidosis trials go to www.ClinicalTrials.gov and type in keywords such as: amyloidosis AL, TTR amyloidosis etc..

    Insurance Coverage and Clinical Trials
    (pharmaceutical companies occasionally cover expenses for certain trials, do inquire)

  • Support Groups

    2018 CALENDAR

    **TTR & Familial**

    AZ/Southwest (Phoenix)

    Carolinas (Charlotte/Durham)

    Chicago

    Florida (Jacksonville)

    Florida (Miami)

    Florida (Tampa)

    Georgia/Alabama

    Indianapolis

    Kansas City

    Louisiana

    Maryland (Baltimore/D.C.)

    Maryland (Hagerstown)

    Massachusetts (Boston)

    Michigan/Ohio

    Minnesota/Upper Midwest

    Nevada (Las Vegas)

    New York City

    New York (Rochester)

    Ohio/PA

    Portland/Seattle

    Philadelphia

    Rocky Mountains (Denver)

    San Diego

    Southern California (L.A.)

    St. Louis

    Texas (Dallas)

    Texas (Houston)

    Utah


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