Mayo Clinic
Rochester, Minnesota
May 8-9, 2010

Living with a Blood Disease: A Comprehensive Workshop for Patients, Family and Friends is for patients and family members that have been cured or who are currently fighting a disease of the blood. For more information visit http://www.mayoclinic.org/blood-patient-workshop/

Clinical Brief (pdf)

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• Patient Advocate Foundation - http://patientadvocate.org/
  
  
• PatientTravel.org is provided as a service of Mercy Medical Airlift (MMA), a national charity. MMA's support comes from charitable giving by individuals, corporations, foundations, churches, civic clubs, the Combined Federal Campaign and designated gifts given through the many United Way Campaigns.
  
  
• The Office of Rare Diseases (ORD) at the National Institutes of Health (NIH) coordinates research and information on rare diseases at the NIH and for the rare diseases community. The ORD Web site provides information for patients and their families with rare diseases and about NIH- and ORD-sponsored biomedical research and scientific conferences.
  
  
• Medicare Coverage of Kidney Dialysis and Kidney Transplant Services
  
  
• ORGAN DONATIONS SITE - http://www.matchingdonors.com/life/index.cfm
  
  
• Care Giver Information - Click here
  
  
• Low Cost Medicines
  • Low Cost Medicines
  • NORD's Medication Assistance Programs
  • Celgene Patient Support Solutions or call 1-888-423-5436
  • Several Co-Pay foundations may also assist with drug expense, like Chronic Disease Fund
  • The Leukemia & Lymphoma Society has also started co-pay assistance

  The list below has sites that have been published on reputable sites. However - there are some that are completely free so it is suggested you go with them before one that asks you to pay a fee. www.pparx.org is the main site for all the pharmaceutical companies under one umbrella - it is reputable, comprehensive and free.

  PATIENT ASSISTANCE PROGRAMS

  Programs/Charities for accessing medicines, reimbursement support, or co-pay assistance

  Partnership for Prescription Assistance (PPARx)
  PPARx is an organization that helps patients who don’t have a prescription drug plan and cannot afford their medicine
  1-800-447-2669
  www.pparx.org

  My Medicare Matters
  1-800-633-4227
  www.mymedicarematters.org

  Chronic Disease Fund Inc.
  1-877-968-7233
  www.cdfund.org

  HealthWell Foundation
  1-800-675-8416
  www.healthwellfounation.com

  Patient Access Network Foundations (PANF)
  1-866-316-7263
  www.patientaccessnetwork.org

  Patient Advocate Foundation C0-Pay Relief
  1-866-512-3861
  www.copays.org

  Patient Services, Incorporated (PSI)
  1-866-366-7741
  www.uneedpsi.org

  RX Assist
  10401-729-3284
  www.rxassist.org

  www.freemedicineprogram.org

  www.freemedicine.com

  PATIENT ADVOCACY ORGANIZATIONS

  Aplastic Anemia and MDS International
  Foundation Inc. (AAMDS)
  1-800-747-2820
  www.aamds.org

  American Cancer Society
  1-800-227-2345
  www.cancer.org

  International Myeloma Foundation
  1-800-452-2873
  www.myeloma.org
  See also the Myeloma Manager™ Personal Care Assistant™ Software program

  Multiple Myeloma Research Foundation
  (MMRF)
  www.multiplemyeolma.org

  Multiple Myeloma Forums
  Andrew Smith Andy@myelomaforums.com

  Myelodysplastic Syndromes Foundation
  1-800-637-0839
  www.mds-foundation.org

  For Medicine through Clinical Trials
  www.clinicaltrials.gov

  FINDING INFORMATION ABOUT A DISEASE OR CONDITION

  National Institutes of Health (NIH)
  http://www.nih.gov/icd/

  MEDLINEplus (a service of the National Library of Medicine and the NIH)
  http://www.medlineplus.gov

  Genetics Home Reference (a service of the National Library of Medicine)
  http://ghr.nlm.nih.gov

  Gene Tests
  http://www.genetests.org

  The Combined health Information Database (CHID)
  *choose the medical genetics and rare diseases sub file
  http://chid.nih.gov/simple/simple.html

  Clinical Research Studies Protocol Database at NIH
  http://clinicalstudies.info.nih.gov

  Computer Retrieval of Information on Scientific Projects (CRISP)
  http://crisp.cit.nih.gov/crisp/crisp/_query.generate_screen

  General Information about clinical studies (Warren grant Magnuson Clinical Center at NIH)
  http://www.cc.nih.gov/participate.shtml

  LOCATING SUPPORT ORGANIZATIONS:

  Genetic Alliance Online Resource Directory
  http://www.geneticalliance.org/diseaseinfo/search.html

  National Organization of Rare Disorders (NORD) Organizational Database
  http://www.rarediseases.org/search/orgsearch.html

  Kansas University Medical Center Genetic and Rare Conditions Information Site
  http://www.kumc.edu/gec/support/

  You may also contact the Genetic and Rare Diseases (GARD) Information Center, a service launched by the National Human Genome Research Institute and the Office of Rare Diseases at the NIH to provide free and immediate access to accurate, reliable information about genetic and rare diseases. Experienced information specialists are available to answer questions by telephone and TTY, email, fax and letter. Telephone and TTY calls are answered Monday through Friday from noon to 6:00 p.m. eastern time.

  Toll Free: 888-205-2311
  TTY: 888-205-3223
  Fax: 240-632-9154
  Email GARDinfo@nih.gov
  Mail: P.O. Box 8126 Gaithersburg, MD 20898-8126
  

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• A note from Licia Paskay
  

  As I experienced for myself, while undergoing high dose chemo and auto stem cell transplantation last year, mental abilities such as attention, memory, problem solving or reasoning are affected, to various degrees by treatment for amyloidosis or myeloma. This "chemo brain", or "chemo fog" as it is sometimes called, is a very troubling side effect.

  Luckily, teaching cognitive strategies is what I do as part of my non-profit therapy center called Purpose, addressing not only the side effects of chemo brain, but also cognitive issues in neurological diseases such as MS, Parkinson's, Alzheimer's etc.

  Purpose is located Culver City, California and our classes for cognitive strategies are on a sliding scale or free-of-charge. This is my way of helping the Southern California amyloidosis community. But if don't live in So. Cal, and you wish to have more info, please visit our website at http://www.purposetherapy.org/Purpose/Welcome.html or write to me at info@purposetherapy.org

  Once again thanks so much for setting up today's meeting and the continued support for patients with amyloidosis.

  Licia C. Paskay MS, CCC-SLP, COM

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• Tips for managing stress, from Ann Fry
  
  
• TIPS FOR ORGANIZING MEDICAL RECORDS ** www.handirecords.com
  “A min file-cabinet at your fngertips” - The ASG will get 50 per cent of the purchase price excluding tax when this item is purchased and upon check out the purchaser states they wish Blanchard Enterprises to donate 50 per cent of the purchase price to Amyloidosis Support Groups.
  **The ASG does not personally endorse this product but think it is an interesting and helpful option for many……
  
  
• Sip of Life (and for more information on Jessica please see our memorial page).
  
  
• The Official U.S. Government Site for People with Medicare: http://www.medicare.gov/
  
  
• Social Security Online: http://www.ssa.gov/disability/
  • "The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities... "
  
  
  
• The Leukemia and Lymphoma Society provide assistance (including financial help) for people with Primary (AL) Amyloidosis: http://www.lls.org/hm_lls
  
  
• The International Myeloma Foundation: http://www.myeloma.org/
  
  
• Also see ASH's Patient Resource page and Find a Hematologist Web site
  
  
• The Waldenstrom’s Macroglobulinemia Foundation Support Meetings http://www.iwmf.com/SupportGroups.htm
  
  
• American Medical Association Home Page http://www.ama-assn.org/
  
  
• FDA SITE: http://www.fda.gov/default.htm
  
  
• Bereavement Link: http://www.nlm.nih.gov/medlineplus/bereavement.html
  
  
• Although the magazine "Cure" was designed for cancer patients, there are many interesting article about food, alternative medicine, coping etc....As long as one checks with their doctor before attempting any of the suggestions, the magazine looks like a wonderful addition to the support area. See www.curetoday.com as the magazine is FREE to Cancer Patients, Survivors and Care Givers and the Leukemia and Lymphoma Society umbrellas Amyloidosis as a "Blood Cancer"...it is a stretch and for those not wishing to make the stretch the cost is $20.00 annually...
  
  
• Modern Healthcare Online: http://www.modernhealthcare.com
  
  
• Amyloidosis Patient's Location Map - it's fun!
  
  
• AmyloidosisSupportGroup-Yahoo Support Group on Line E-Mail
  http://health.groups.yahoo.com/group/AmyloidosisSupportGroups/
• See also: WIDOWS(ERS) OF AMYLOIDOSIS ON LINE HELP COMMUNITY

Support Groups by Country:

Australia	www.amyloidosissupport.com/support_groups/australia.html
Canada	www.thecasn.org
Finland	http://koti.welho.com/ssilvone/amyloidoosi.htm
France	http://www.amylose.net/
Germany	http://www.amyloidose.de/
Holland	http://www.amyloid.nl/
Israel	http://www.amyloidosis.co.il/
Italy	http://www.amiloidosi.it/
Portugal	http://paramiloidose.tripod.com/index.htm
Switzerland	http://www.amyloidose.ch/
United Kingdom	http://www.amyloidsupportgroup.co.uk/

MM Support (NZ):
http://web.mmsupport.net/

TALK TO OTHERS WALKING YOUR WALK. JOIN WWW.AMYLOIDOSISONLINE.COM

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Amyloidosis Support Groups
AmyloidosisSupport.com
1-866-404-7539 TOLL FREE USA