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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

CALIFORNIA

This support group welcomes all patients, families and friends. They meet quarterly from 10am – 2pm. Remaining dates listed below. Refreshments provided. Please RSVP with number attending the meeting here.

2017 Dates:

October 21 – Stanford, 875 Blake Wilbur Dr., 2nd floor conference room

Please contact support group leader, Dena Heath, if you need more information:

Northern California AF Support Group

Northern California AF Facebook Page

TENNESSEE

This group is for all who seek amyloidosis support. They meet monthly at Vanderbilt University Medical Center in Nashville. Contact our Group Leader, Charlotte Haffner, for details  (charhaffner@gmail.com).

Below is the remaining date for 2017. Lunch will be provided. Please RSVP with number attending the meeting here or send an email to: charhaffner@gmail.com.

December (TBD)

We will also host a meeting at the University of Tennessee Cancer Institute in Knoxville. The meeting will be from 10am – 2pm, lunch will be provided. Please RSVP with number attending the meeting here or send an email to: charhaffner@gmail.com. The next meeting will be:

October 28 (10am – 2pm)

Please contact support group leader, Charlotte Haffner, to RSVP for our support group meetings or 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
Brochures
Amyloidosis Foundation Newsletters

Webinars

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 http://www.myelomatv.org.uk.

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

GOVERNMENT AGENCIES

 

The Official US Government Site for Medicare:

medicare.gov

Social Security Online:

Providing assistance to people with disabilities.

ssa.gov

Veterans and Agent Orange – Approval for Veterans with AL Amyloidosis:

publichealth.va.gov/

gpo.gov/

 

ORGAN FOUNDATIONS AND LINKS

 

The Liver Foundation:

liverfoundation.org

The Foundation for Peripheral Neuropathy:

foundationforpn.org

The KIDNEY Foundation:

kidney.org

The National Foundation for Transplants:

transplants.org

 

RESOURCES FOR CAREGIVERS

 

AARP Caregiving Resource Center:

Planning and resources for juggling life, work, and caregiving.

states.aarp.org/tag/aarp-caregiving-resource-center/

Caringbridge:

Share your personal medical journey and health updates with family and friends who care and want to help.

caringbridge.org/

Family Caregiver Alliance:

Supports and sustains the important work of families nationwide caring for loved ones with chronic, disabling health conditions.

caregiver.org

Patient Advocate Foundation:

Provides patients with arbitration and mediation and negotiation to settle access to care, medical debt, and job retention related to their illness.

patientadvocate.org

 

INSURANCE INFORMATION

 

Link for State Heath Insurance Information

 

FINANCIAL ASSISTANCE FOR DRUGS

 

Pharmaceutical Patient Assistance Programs:

Current and comprehensive directory of pharmaceutical patient assistance programs.

rxassist.org

Partnership for Prescription Assistance:

Help for qualifying patients without prescription drug coverage to get the medicines they need for free or nearly free.

pparx.org

GoodRX

Compares retail prices of prescription drugs from different pharmacies in the United States. Coupons, discount card. Mobile app.

goodrx.com

 

OTHER RESOURCES

 

Global Genes

A global rare disease patient advocacy organization.

Link to Global Genes

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.

Link for the IWMF

Hereditary ATTR Amyloidosis 

Awareness and education of ATTR amyloidosis.

ATTR Bridge

 

The Binding Site

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

Link for 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.

www.cancer.org/hopelodgeboston

 

Corporate Angel Network:

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

corpangelnetwork.org

 

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.

mercymedical.org

 

National Patient Travel Center:

A source for long distance medically related travel needs.

PatientTravel.org

 

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.

miracleflights.org

 

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.

AMR Air Ambulance

Travel