Planning for Transplant Costs from the National Marrow Donor Program
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
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
Multiple Myeloma Research Foundation
(MMRF)
http://www.themmrf.org/
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:
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
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
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
