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The Resources

Fundraising Toolkits

Useful guides to help make your fundraising event a success

Golf outing toolkit

Get in the swing for success

Download
Wine tasting toolkit

Making your event go with the flow

Download
Bicycle fundraiser toolkit

Get your bicycling event on track

Download
Pancake breakfast toolkit

Give your event the perfect start

Download
Fun walk/run toolkit

Get into your fundraising stride

Download

 

 

Patient Resources

Websites and Support Groups

AMYLOIDOSIS FOUNDATION – AFFILIATED SUPPORT GROUPS

NORTHERN CALIFORNIA

This support group welcomes all patients, families and friends. They meet quarterly. Refreshments provided.

Please contact support group leader, Dena Heath, for more information:

Northern California AF Support Group

Northern California AF Facebook Page

TENNESSEE

This group is for anyone looking for amyloidosis support in the Nashville area. They meet at the Vanderbilt University Medical Center, Vanderbilt Clinic. New dates will be announced soon.

Lunch will be provided during the meetings. Contact our Group Leader, Charlotte Haffner, for details (charhaffner@gmail.com).

We will also host meetings at the University of Tennessee Cancer Institute in Knoxville, building F, 1926 Alcoa Hwy. New dates will be announced soon.

Please contact support group leader, Charlotte Haffner if you need additional information. Her email is charhaffner@gmail.com.

WASHINGTON

This group offers support to anyone affected by amyloidosis. They meet in Seattle throughout the year. Please contact support group leader, Dena Fantle, for meeting dates and more information:

Washington AF Support Group

 

Other U.S. Support Groups

Smart Patients is an online support community for patients and caregivers. Here is a link to the Amyloidosis Foundation page: Smart Patients

The ALECT2 Alliance is a website for patients focused on ALECT2 amyloidosis: ALECT2

A website of other support groups for amyloidosis patients:  Amyloidosis Support Groups

 

INTERNATIONAL WEBSITES & SUPPORT GROUPS

Australia:  www.amyloidosis.com.au

Brazil:   www.abpar.org.br

Canada:  www.thecasn.org

Finland:   http://www.suomenamyloidoosiyhdistys.fi/

France:  http://www.amylose.asso.fr/

Germany:  home.arcor.de/a-ludwig

Israel:  http://israblog.nana10.co.il/blogread.asp?blog=530202

Israel Facebook:   http://www.facebook.com/#!/groups/108804022537602

Italy:

http://www.orpha.net/consor/cgi-bin/SupportGroup_Search.php?lng=IT&data_id=27517&title=AAMI—Associazione-Amiloidosi-Italiana

Contact: aamiamiloidosi@libero.it

The Netherlands:  www.amyloidose.nl

Portugal:  http://www.paramiloidose.com/

Spain:  www.idibaps.org/

Sweden:  http://www.igp.uu.se/research/clinical_experimental_pathology/per_westermark/?languageId=1

http://www.famynorrbotten.se/

United Kingdom:

http://www.ucl.ac.uk/amyloidosis/pdfs/local_amyloidosis_support_groups

http://www.myeloma.org.uk/information/related-conditions/al-amyloidosis/

 

 

Websites and Support Groups

Treatment Centers

Click here for an international map of treatment centers

 

USA

ARIZONA

Mayo Clinic

CALIFORNIA

Cedars-Sinai Hospital

City of Hope

Stanford University

COLORADO

Colorado Blood Cancer Institute

FLORIDA

Mayo Clinic

University of Miami

ILLINOIS

University of Chicago

INDIANA

Indiana University

KANSAS

Saint Luke’s Hospital of Kansas City

MASSACHUSETTS

Boston University Medical Center

Brigham & Women’s Hospital

Tufts University

MICHIGAN

Karmanos Cancer Center

MINNESOTA

Mayo Clinic

MISSOURI

Saint Luke’s Hospital of Kansas City

NEW YORK

Columbia University Medical Center

Memorial Sloan Kettering Cancer Center

NORTH CAROLINA

University of North Carolina

OHIO

Cleveland Clinic

PENNSYLVANIA

University of Pittsburgh Amyloidosis Center

University of Pennsylvania Medical Center

TENNESSEEE

Vanderbilt University 

UTAH

University of Utah Amyloidosis Program

WASHINGTON

Seattle Cancer Care Alliance

 

INTERNATIONAL

Argentina-Hospital Italiano of Buenos Aires

Australia

     Princess Alexandra Hospital Amyloidosis Centre (Brisbane)

     Westmead Hospital Amyloidosis Clinic (Sydney)

     The Victorian and Tasmanian Amyloidosis Service – VTAS Contact email (Melbourne)

Brazil – Center for the Study of Familial Amyloidosis (Rio de Janeiro)

Canada – Princess Margaret Cancer Centre (Toronto)

France – CHU Limoges

Germany – Heidelberg University Hospital

Italy – Center for the Study and Cure of Systemic Amyloidosis (Pavia)

Japan – Shinshu University School of Medicine (Matsumoto)

Spain – Hospital Puerta de Hierro (Madrid)

The Netherlands – Groningen Unit for Amyloidosis Research and Development

United Kingdom – National Amyloidosis Centre (London)

Treatment Centers
Brochures
Amyloidosis Foundation Newsletters

Webinars

AMYLOIDOSIS 2030: A SyFy Special

Raymond Comenzo, MD – Tufts University School of Medicine, Boston

ATTRwt Cardiac Amyloidosis

Mat Maurer, MD – New York Presbyterian Hospital and Columbia University Medical Center

Untangling Amyloidosis

Vaishali Sanchorawala, MD and Frederick L. Ruberg, MD – Boston University/Boston Medical Center Amyloidosis Center

The Changing Paradigm of Amyloidosis Treatment

Jeffrey Zonder, MD – Karmanos Cancer Institute, Detroit, MI

TTR Amyloidosis, What Every Patient Must Know 

Giampaolo Merlini, MD – University of Pavia, Italy

Amyloidosis 101

Morie Gertz, MD – Mayo Clinic, Rochester

TTR-FAP, The Link Between Neuropathy and Amyloidosis

Courtesy of the Neuropathy Association, Mat Maurer, MD – Columbia University and Michael Polydefkis, MD – Johns Hopkins

Amyloidosis:  What You Need To Know  

Morie Gertz, MD – Mayo Clinic, Rochester

Diagnosis and Treatment of Amyloidosis

Suzanne Lentzsch, MD PhD –  New York Presbyterian Hospital

Cardiac Amyloidosis: What Every Cardiologist Needs to Know

Grand Rounds with Martha Grogan, MD – Mayo Clinic, Rochester

Treatment Options in Cardiac Amyloidosis

Martha Grogan, MD – Mayo Clinic, Rochester

Amyloidosis, Past, Present and Future

Giampaolo Merlini, MD – University of Pavia, Italy

Webinars

Videos

AMYLOIDOSIS MATTERS – DISEASE PRESENTATIONS AND GUIDES FROM THE MYELOMA UK FOUNDATION

The Myeloma UK Foundation has made these videos and guides available to the public through their website

The Amyloidosis Foundation supports the excellent AL Amyloidosis disease information provided through the Myeloma UK Foundation.  However, please note that some of the drugs, tests, treatment and clinical trials that are mentioned in this information may not be available outside of the UK and may differ from country to country.

Videos
Vietnam Veterans Resources

RARE Toolkits

The Amyloidosis Foundation is a member of the Global Genes Foundation Alliance. They have generously agreed to allow us to share a link to thier RARE Toolkits.

These provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients. RARE Toolkits are created in collaboration with key rare disease stakeholders that have developed a vast array of subject matter expertise and believe in the importance of sharing these best practices.

Please use these resources to help you an your family:

RARE Toolkits

RARE Toolkits
Exercise

Additional Resources

FINANCIAL ASSISTANCE FOR DRUGS

The Assistance Fund

Alnylam Assist (hATTR hereditary amyloidosis)

Inotersen Expanded Access Program (hATTR hereditary amyloidosis)

Rx Patient Assistance Programs

Partnership for Prescription Assistance

GoodRX

 

GOVERNMENT AGENCIES

The Official US Government Site for Medicare

Social Security Online Link

Veterans and Agent Orange – Approval for Veterans with AL Amyloidosis

Complete Aging Guide for Veteran Seniors

 

ORGAN FOUNDATIONS AND LINKS

The Liver Foundation

The Foundation for Peripheral Neuropathy

The Kidney Foundation

The National Foundation for Transplants

 

RESOURCES FOR CAREGIVERS

AARP Resource Center

Caringbridge

Family Caregiver Alliance

Patient Advocate Foundation

 

INSURANCE INFORMATION

Amyloidosis & Insurance (webinar)

Link for State Heath Insurance Information

 

OTHER RESOURCES

CancerCare 

They offer limited financial assistance for cancer-related costs such as transportation and child care, plus oncology social workers to assist with finding resources.

Global Genes

A global rare disease patient advocacy organization.

International Waldenstrom’s Macroglobulinemia Foundation

Waldenström’s Macroglobulinemia (WM) is a cancer of the lymphatic system and is a type of lymphoma. For some patients, complications of Waldenström macroglobulinemia may result in amyloid deposits.

Hereditary ATTR Amyloidosis 

Awareness and education of ATTR amyloidosis.

The Binding Site

Find out more about the Freelite (FLC) Assay Test for AL amyloidosis developed by The Binding Site.

Additional Resources

Travel

Hope Lodge – Boston

Is a program of the American Cancer Society that offers a safe, supportive, and self-sufficient home away from home for those in active outpatient amyloidosis and cancer treatment.

Corporate Angel Network

Matches cancer patients in need of travel with private corporate jet schedules. Information for patients and potential corporate sponsors.

Mercy Medical Airlift

Provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.

National Patient Travel Center

A source for long distance medically related travel needs.

Miracle Flights

Founded in 1985, Miracle Flights assures families with limited financial resources that their sick child is not without options. Children in need of out-of-state medical care or second opinions may be eligible to receive air travel assistance through Miracle Flights, at no cost and as many times as needed.

AMR Air Ambulance

AMR Air support team is on call 24 hours a day, seven days a week. They provide a safe and professional environment for patient transfer, as well as online medical control. Highly trained and certified nurses, paramedics, respiratory therapists and physicians are available 24 hours a day to safely transport and meet the needs of every patient population.

 

Travel

Oct 26

3rd Annual Pittsburgh Research Benefit

Montour Heights Country Club

More
Nov 10

Hills & Hollers 5k & Half Marathon

Williamson County, TN

More
Nov 17

Amyloidosis Symposium

Washington University in St. Louis

More