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New Trial
Hot Alnylam News – Expanded Access
EAP – PATISIRAN -hATTR
For Hereditary ATTR Patients
w/Polyneuropathy (FAP)
Click Here!

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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.com


IMPORTANT CLINICAL TRIALS


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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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  • Daratumumab for the Treatment of Patients With AL Amyloidosis
  • Antibody 11-1F4 Study of Chimeric Fibril-Reactive Monoclonal Antibody 11-1F4 in Patients With AL Amyloidosis
    (The antibody production for 11-1F4 for a phase 2 trial for newly diagnosed patients has started but will take until 2018. They hope to have the first patient on trial in the first quarter of 2018)
  • The VITAL Amyloidosis Study, a Global Phase 3, Efficacy and Safety Study of NEOD001 in Patients With AL Amyloidosis (VITAL)
  • The PRONTO Study, a Global Phase 2b Study of NEOD001 in Previously Treated Subjects With Light Chain (AL) Amyloidosis (PRONTO)
  • --AL--

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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

    First-line Pomalidomide, Bortezomib, and Dexamethasone For AL Amyloidosis or LCDD

    ANTIBODY 11-1F4

  • Study of Chimeric Fibril-Reactive Monoclonal Antibody 11-1F4 in Patients With AL Amyloidosis
    CLINICAL TRIAL-AL-LOCALIZED AND SYSTEMIC -ANTIBODY 11-1F4-FACT SHEET (pdf)

    Amyloidosis treatments (except for the antibody trials above) are approved for Multiple Myeloma and passed down for off label use to the AL amyloidosis community. Not all MM drugs work well on AL and the trials help our doctors learn which ones are the “keepers”.

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    --ATTR--

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    Free Testing if you have a suspicion
    DISCOVERY: A Study Examining the Prevalence of TTR Mutations in Subjects Suspected of Having Cardiac Amyloidosis

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    Diflunisal – Results

  • Repurposing Diflunisal for Familial Amyloid Polyneuropathy

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    -AA-

    (for secondary amyloidosis)

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    Active, not recruiting: Efficacy and Safety Study of KIACTA in Preventing Renal Function Decline in AA Amyloidosis

    NOT YET RECRUITING

    Not yet recruiting: Progression of Renal Amyloidosis of FMF and Relation to Serum SAA Level

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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

    FULL 2017 CALENDAR

    **TTR & Familial**

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