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.
The Resources
Fundraising Toolkits
Useful guides to help make your fundraising event a success
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 from 10am – 2pm. 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, Room 8380B from 10:30am – 1:45pm.
Lunch will be provided. Contact our Group Leader, Charlotte Haffner, for details (charhaffner@gmail.com).
The next meeting will be: Thursday, August 16, 2018
**Please RSVP by August 14th to charhaffner@gmail.com
____________________________
We will also host meetings at the University of Tennessee Cancer Institute in Knoxville, building F, 1926 Alcoa Hwy.
The next meeting will be:
- Saturday, August 18, 2018
**Please RSVP by August 16th to charhaffner@gmail.com
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:
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:
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
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
CALIFORNIA
COLORADO
Colorado Blood Cancer Institute
FLORIDA
ILLINOIS
INDIANA
MASSACHUSETTS
Boston University Medical Center
MICHIGAN
MINNESOTA
NEW YORK
Columbia University Medical Center
Memorial Sloan Kettering Cancer Center
NORTH CAROLINA
OHIO
PENNSYLVANIA
University of Pittsburgh Amyloidosis Center
University of Pennsylvania Medical Center
TENNESSEEE
UTAH
University of Utah Amyloidosis Program
WASHINGTON
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)
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
Treatment Centers
Brochures
Amyloidosis – Patient Overview
Amyloidosis – Patient Overview (Hebrew)
AL Physician Guide (Portuguese – Portugal)
ATTRwt (Wild-type Amyloidosis) – Patient Overview
Brochures
Amyloidosis Foundation Newsletters
Amyloidosis Foundation Newsletters
Webinars
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.
- What is AL amyloidosis?
- Introduction to AL amyloidosis
- Current treatment strategies
- Future developments
- Management of complications and side-effects
- Cardiac imaging
- Patient experience from Myeloma UK Infoday
- Understanding AL amyloidosis
- Treating AL amyloidosis
- Giampaolo Merlini, MD talks to Myeloma UK
Videos
Vietnam Veterans Resources
Veterans and Agent Orange – Approval for Veterans with AL Amyloidosis
Article on Veterans Affairs & Agent Orange Benefits
Department of Veterans Affairs Register – AL Amyloidosis
Veterans Choice Program Fact Sheet
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
Exercise
Exercises for Peripheral Neuropathy
Exercise
Additional Resources
FINANCIAL ASSISTANCE FOR DRUGS
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
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
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
