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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




To find treatment near where you live, select your state from the drop down list and click the Find Treatment button.



Prothena Sponsored Survey for AL(Primary) Amyloidosis Patients Diagnosed within the past two years.


(Research study opportunity. The purpose of this study is to gain insight into how AL amyloidosis influences health-related quality of life and to validate survey items for future use in research studies. Investigators are looking for volunteers who were diagnosed with AL amyloidosis within the past two years. Volunteers will be asked to complete a series of Web-based surveys over the course of 18 months. There is no medical treatment being provided as a part of this study. If selected to participate, you will be compensated for your time.

This study is sponsored by Prothena Biosciences, Inc. This study will be conducted by Optum, a research organization. Please note that Prothena will not receive any identifying information and any information that you provide will be reported in a way that protects your privacy and anonymity.

This is an important study and an exciting opportunity for the voice of AL patients to be heard. )


-- Additional Support Resources --

On Line Support Website         Hereditary Amyloidosis Website

AMYLOIDOSIS AWARENESS BOOKLET (pdf)


AMYLOIDOSIS ANIMATED VIDEO WITH SUBTITLES IN 14 LANGUAGES
(Click here to watch video on Vimeo) or press PLAY button on video below:

To turn on captions or subtitles, click the "CC" button in the video player's toolbar.


International Amyloidosis Centers

Center for the Study of Familial Amyloidosis
(Rio de Janeiro, Brazil)
Center for the Study & Cure of Systemic Amyloidosis
(Pavia, Italy)
Germany
(Heidelberg)
Groningen Unit for Amyloidosis Research & Development
(The Netherlands)
National Centre for Amyloidosis
(London, U.K.)
Princess Alexandra Hospital
(Brisbane, Australia)
Spain
(Barcelona)
Westmead Hospital
(Sydney, Australia)
Kumamoto University Hospital
(Kumamoto, Japan)
Princess Margaret Cancer Centre
(Toronto, Canada)


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