Resources

Backs looking out

This page contains resources that we have found helpful. A listing of doctors who have treated fibrolamellar patients can be found here.  Anyone with other names or resources, please let us know.

FINDING OTHER FIBROLAMELLAR PATIENTS AND FAMILIES

Facebook -“Fibrolamellars of the World Unite!”
This is a closed group so only those touched by the disease can be part of it.  We encourage all newly diagnosed patients and their families to join. Just go to facebook, type in the group name and request to be included.  An administrator for the group will get back to you quickly.

COMMUNICATING PATIENT UPDATES

During the course of a health crisis, family and friends are looking for frequent updates.  We discovered two websites, www.carepages.org and www.caringbridge.org, that provide a forum for updates on the patient’s condition and a platform for supportive comments from site visitors.

CORPORATE ANGEL NETWORK – FREE FLIGHTS

Cancer patients can fly to recognized treatment centers around the country – absolutely free – in the empty seats on corporate jets. No costly airfare. No stressful delays. No unnecessary exposure to airport crowds. Corporate Angel Network, a national public charity, works directly with patients and families to coordinate their travel needs with flight plans of our Corporate Angels, some of the nation’s largest corporations. Since 1981, they’ve arranged more than 20,000 flights with cancer patients aboard.

The Corporate Angels Network is 500 strong including 56 of the top 100 in the Fortune 500, who generously make empty seats on their aircraft available to their patients. They work directly with the flight department of any corporation to coordinate with patients. Corporations willing to participate should call at 914-328-1313.

Patient Toll Free 866-328-1313.

Email: Info@CorpAngelNetwork.org, or visit their website

HOUSING/HOTELS NEAR MAJOR CANCER CENTERS

Many major medical centers have a Ronald McDonald house nearby for families with children under treatment. The Ronald McDonald organization and Joe’s House are good resources to locate temporary residence options.  Contacting the social services of any major medical center can frequently provide housing leads and discounts at local hotels.

CHILDHOOD HOSPITAL CARE WITH NO COST TO FAMILIES

St. Judes – based in Memphis, TN but has affiliate care throughout the United States. Families never receive a bill from St. Jude for treatment, travel, housing or food. St. Judes accepts insurance but many services provided by St. Jude have never been covered by insurance, and will not be in the future.


OTHER FIBROLAMELLAR WEBSITES

  • Facebook – “Fibrolamellars of the World Unite!”
    This is a closed group so only those touched by the disease can be part of it.  We encourage all newly diagnosed patients and their families to join. Just go to facebook, type in the group name and request to be included.  An administrator for the group will get back to you quickly.
  • Facebook – “The Fibrolamellar Cancer Foundation” Facebook page
  • fibroregistry.org – The Registry is dedicated to helping patients advance the research into fibrolamellar by sharing their medical information with researchers and each other.
  • fibrosurvey.org – The purpose of this survey is to establish a database for patients to navigate the various treatments and therapies and learn from the experiences of others.
  • CaitlynsFight.org – Established by Caitlyn’s father. Caitlyn had fibrolamellar. Their mission is to provide emotional support and financial assistance to families of children diagnosed with rare forms of pediatric cancer.

YOUNG ADULT AND OTHER CANCER WEBSITES

  • FirstDecents.org – challenging outdoor adventures for young adults with cancer
  • ImermanAngels.com – one-on-one support
  • LiveStrong – Lance Armstrong Foundation which includes information about fertility after cancer
  • molecularmatch.com – This site provides information on specific treatments for specific mutations and cancers.
  • chemocare.com – Information about chemotherapy, its effects and side effects, an initiative of The Cleveland Clinic and cancer survivor Olympic skater Scott Hamilton.
  • NORD WEBSITE – National Organization for Rare Diseases is specifically devoted to information for patients and families dealing with rare diseases, including rare cancer.
  • StupidCancer.org –  focuses on young adult cancer – advocacy, activities and networking
  • The SAMFund.org – Through direct financial assistance as well as online support, The SAMFund gives young adult cancer survivors the tools and resources to overcome their financial challenges and move forward with their lives.
  • 15-40.org – focuses on cancer self-awareness for earlier detection of young adult cancers

RECOMMENDED READING     

DOCUMENTARIES AND INFORMATIVE VIDEOS

HEALTHY COOKING