Sunday, May 29, 2011

Links



Useful links for
Brain Cancer
Patients & Caregivers

When initially diagnose:
  • The Int'l Brain Tumor Alliance: http://www.theibta.org/It seeks to be an alliance of the support, advocacy and information groups for brain tumor patients and caregivers in different countries
If you need a second opinion
Email / Other Support Groups:
  • Clinical Trials:
            CANCER TRIALS  
REHAB TRIALS
EUROPEAN CANCER TRIALS
TRIALS AND TREATMENT LIST


  • Medical Equipment / Remodeling
  • Medical ID Alert bracelets and necklaces engraved with your primary medical condition, ID number, and the 24-Hour Emergency Response Center number. http://www.medicalert.org/home/HomeCatalog.aspx?Catalog=Standard
  • American Medical ID serves the medical community and the public at large by offering quality medical IDs that, in a medical emergency, allow medics or other medical professionals to give prompt, precise treatment. http://www.americanmedical-id.com/
  • Hospice Info:
  • For caregivers, so they may recognize and understand end-stage events that are likely to happen the last few days. http://brainhospice.com/
  •  National Hospice and Palliative Care Organization (NHPCO) – HelpLine: 800.658.8898
    Spanish HelpLine: 877.658.8896

  • www.caringinfo.org
  • Free Medical Info or Abstracts



  • Financial Support Resources
  • THE PATIENT ADVOCATE FOUNDATION – Tel 1-866-512-3861
  • http://www.copays.org/ - Co-Pay Relief program for people with type 3 and 4 brain tumors
  • Pharmaceutical Research and Manufacturers of America (PhRMA) 202-835-3400
  • www.phrma.org
  • RxHope.com (732-507-7400) helps patients obtain free or low-cost prescription medications.
  • Cancer Fund of America is a non-profit organization set up to help cancer patients, hospices, and other non-profit healthcare providers by way of sending products free of charge directly to them
  • http://www.cfoa.org/
  • United Way office can also direct people to services in their community.
  • The Leukemia & Lymphoma Society's
    patient financial aid program (800-955-4572) provides limited financial assistance to patients with significant need to help defray treatment-related expenses
  • http://www.greyribboncrusade.org is a movement to unite the brain tumor community under one National Brand/Voice. Here you will find the links to many BRAIN TUMOR Organizations.
  • Cure Today Tool Box, an excellent list of resources: http://curetoday.com/toolbox
  • Free subscription to their magazine/guide
  • Info in Spanish available
  • SAMF - Organization created to assist young adult survivors of cancer with a successful transition into their post-treatment life, by providing financial support through the distribution of grants and scholarships. http://www.thesamfund.org/


  • Insurance / Legal Issues
  • http://www.patientadvocate.org/help4u.php
  • The National Underinsured Resource Directory is intended to help underinsured individuals and families locate valuable resources and seek alternative coverage options or methods for better reimbursement

 
  • U.S. Equal Employment Opportunity Commission
  • (eeoc.gov/facts/cancer.html)
  • US Department of Justice (usdoj.gov)
  • US Department of Labor (dol.gov)
  • http://www.mrmib.ca.gov/MRMIB/MRMIB4.html
  • The MRMIB was created in 1990 with a broad mandate to advise the Governor of CA and the Legislature on strategies for reducing the number of uninsured persons in the state


  • Travel & Housing Assistance
  • Make a Wish Foundation for kids: http://wish.org/ - PHONE -(800) 722-WISH (9474)
    Fax: (602) 2790855
  • FREE 1 week all expenses paid vacation to those with a diagnosis of cancer, and their caregiver. ONLY IN THE STATES OF PA, NJ, and DE. http://crossingthefinishline.org/
  • Angel Flight West arranges free air transportation in response to health care and other compelling human needs.1-888-4-AN-ANGEL.or 888-426-2643. http://www.angelflight.org/
  • Established by Bob & Barb Gibbs to raise funds for promising brain tumor clinical trials and research. They have a flights assistance: http://www.milesforhope.org/
To use the following services, you might need to contact the National Cancer Info Center at 800-227-2345 to receive an ID Number. They can also provide you with information on other services that are available that may not be on this list.
  • Mercy Medical Airlift - 21 days advance notice and require ID number - 888-675-1405
  • United Mileage Plus Program - maintained by Mercy Medical Airlift -21 days after medical clearance is received from your physician - 888-675-1405
  • Miracles Flights - 10 business days notice call Mon-Thurs - 800-359-1711
  • Corporate Angel Network - CORPORATE JETS - 1 weeks notice - 866-328-1313
  • Midwest - Miracle Miles - 1 weeks notice - 414-570-4118
Others Travel and housing assistance
  • Air Care Alliance (888-260-9707) offers a central listing of free transportation services provided by volunteer pilots and charitable aviation groups.
  • Air Charity Network (877-621-7177) coordinates free air transportation for people in need.
  • Angel Flight Samaritans (800-296-1217) provides long-distance travel for people with cancer and their families in need of travel.
  • The Corporate Angel Network (866-328-1313) arranges free air transportation for people with cancer traveling to treatment using empty seats on corporate jets.
  • The National Patient Travel Helpline (800-296-1217) provides information about charitable, long-distance medical air transportation and provides referrals to appropriate sources.
  • The Candlelighters Childhood Cancer Foundation maintains a list of additional organizations offering assistance for treatment-related travel.
  • The National Association of Hospital Hospitality Houses (800-542-9730) is an association of more than 150 nonprofit organizations that provide lodging and support services to families and their loved ones who are receiving medical treatment away from home.
  • Ronald McDonald House Charities (630-623-7048) offer free or reduced-cost lodging for families of seriously ill children who are receiving treatment at nearby hospitals.

  • Cancer Nutrition:

  • Where to buy supplements:

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