Fanconi Canada  

The Canadian Fanconi Anemia Research Fund
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Information and links for Canadian FA families.

Click on the following categories for useful information and support for Canadian FA families.

  1. Family Websites
  2. FA Worldwide
  3. Canadian FA-related organizations
  4. Online Publications
  5. Medical Information You Can Order
  6. Medications Used to Treat FA
  7. Email Groups
  8. Fanconi Canada Newsletters
  9. Canadian Inherited Marrow Failure Registry
  10. National Cancer Institute Study
Canadian Family Websites
  • Charlotte Fecteau (Oct. 14, 1994 - Jan. 5, 2005)
    Charlotte began her journey into transplant as a beautiful, bright 8 year old in Grade 3 from Moncton, NB. She was diagnosed at age 5. Charlotte's first bone marrow transplant in April 2003 was not successful. She had a second transplant in August 2003 that never worked well enough to be considered a true success. Two months later, Charlotte suffered neurological damage from undetermined causes that left her unable to walk, talk and cognitively impaired. She relearned how to walk but her sweet voice was never to be heard again.
  • Isabelle Lamoureux
    Isabelle was diagnosed at birth with FA underwent a bone marrow transplant at Hopital Ste-Justine in Montreal in 2003 when she was 3 years old.
  • Aaron Shelson
    Aaron underwent an unrelated bone marrow transplant for Fanconi anemia in 2003 in Minneapolis when he was nine years old.
  • Sylvie Lauzier
    In August 2002, Sylvie underwent an unrelated bone marrow transplant in Toronto.

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FA Worldwide

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Canadian FA-related organizations
  • Canadian Blood and Marrow Transplant Group
    The Canadian Blood and Marrow Transplant Group (CBMTG) is a national, voluntary, and multi-disciplinary organization providing leadership and promoting excellence in patient care, research and education in the field of blood and marrow transplantation.
  • Aplastic Anemia & Myelodysplasia Association of Canada
    The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a leading funder of research into bone marrow failure diseases in Canada. A volunteer-run organization that supports patients and caregivers across the country who are living with aplastic anemia, myelodysplastic syndrome (also called MDS or myelodysplasia) and paroxysmal nocturnal hemoglobinuria (PNH).
  • Make a Wish Foundation
    The Make-A-Wish Foundation is the largest non-profit wish-granting organization in the world. It exists for one purpose: to fulfill the special wishes of children under the age of 18 who have life-threatening illnesses.
  • Starlight Children's Foundation Canada
    Starlight Children's Foundation International helps brighten the lives of thousands of seriously ill children through wish granting and other entertainment-related activities. Other Starlight programs include, Starlight Rooms, Fun Centres and the Kidz Activity Network which helps to put a smile back on these young hopeful faces.
  • Childhood Cancer Foundation Canada - Candlelighters Canada
    The Childhood Cancer Foundation ~ Candlelighters Canada is a national support and information network with international affiliation. It is dedicated to enhancing the quality of life of children and teens with cancer, their families and all those who care for and about them.
  • OneMatch Stem Cell and Marrow Network
    is responsible for finding and matching volunteer donors for patients who require stem cell transplants. Fewer than 30 per cent of patients who need stem cell transplants find a compatible donor within their own families. The rest rely on those who have volunteered to donate stem cells to anyone in need.
  • Canadian Organization for Rare Diseases
    Through an educational and informational support network, CORD is committed to the enhancement of the lives of all persons affected by rare disorders.
  • Easter Seal Society
    Easter Seals provides a wide variety of services that go a long way in making a better life for both children with physical disabilities and their families.
  • Children's Wish Foundation of Canada
    The Children's Wish Foundation of Canada is dedicated to fulfilling a favorite wish for children afflicted with a high risk, life-threatening illness.

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Online Publications
     

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Medical Information You Can Order
  • Fanconi Anemia - A Handbook for Families and Their Physicians, Third Edition 2000
    By Lynn and Dave Frohnmayer
    Published by the Fanconi Anemia Research Fund, Inc., Eugene, Oregon
    This Handbook gives basic information, in plain language, about understanding and coping with Fanconi Anemia.
    Free
  • Fanconi Anemia, Standards for Diagnosis and Management, 3rd edition (2008)
    Published by the Fanconi Anemia Research Fund, Inc., Eugene Oregon
    Free
  • Fanconi Canada Newsletters
    Add yourself to the mailing list to receive these bilingual newsletters published by Fanconi Canada.
  • Click here to order any of these publications.

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Medications Used to Treat FA

The following provides information on some common medications used to boost blood cell production in FA patients.

  • Oxymethalone
    Anadrol®-50 is indicated in the treatment of anemias caused by deficient red cell production. Acquired aplastic anemia, congenital aplastic anemia, myelofibrosis and the hypoplastic anemias due to the administration of myelotoxic drugs often respond.
  • Oxandrin (oxandrolone)
  • G-CSF Neulasta (Pegfilgrastim)
    Neulasta® is a recombinant (genetically engineered) protein that stimulates the production of infection-fighting white blood cells called neutrophils that are depleted by cytotoxic chemotherapy (neutropenia). Neulasta� is a longer-acting form of NEUPOGEN® (Filgrastim), Amgen�s original white blood cell stimulating product.
  • G-CSF (Neupogen)NEUPOGEN® (Filgrastim), a treatment that stimulates your body to produce more white blood cells.
  • Epoetin (Epogen)EPOGEN® (Epoetin alfa)is a recombinant protein that works in a similar way as the body�s natural erythropoietin � a glycoprotein produced by the kidneys that circulates through the bloodstream to bone marrow, where it stimulates red blood cell production.
  • Health Canada Special Access Program
    The Special Access Programme (SAP) provides access to nonmarketed drugs such as oxymethelone. The SAP authorizes a manufacturer to sell a drug that cannot otherwise be sold or distributed in Canada. The treating doctor applies on the basis that FA is a serious or life-threatening conditions for which conventional therapies have failed, are unsuitable, or unavailable.

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Email Groups
  • Family Support e-mail group
    A free email group for FA families to share day-to-day concerns and personal experiences with FA.The place to update other families about transplant news, how to prepare for transplant, sharing concerns about your child attending school, and any other experiences that concern the world of FA.
  • Bereaved Families e-mail group
    The bereaved Fanconi group is a place where families can post messages to each other related to the loss of a child or a spouse who died from FA. There are no restrictions to the messages - they can be on encouragement, survival, coping, or just sharing your feelings or need for help. This is a special place for you. Membership is not restricted to the bereaved only, as friends of these families may want to help or gain survival insights from them.

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Fanconi Canada Newsletters

Please click on the newsletter you would like to view.

Adobe Acrobat Reader required. This can be downloaded here.

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Canadian Inherited Marrow Failure Registry

The Canadian Inherited Marrow Failure Registry (CIMFR) is a non-profit registry. It has created an important collaborative panel focused on these disorders. Its goal is to collect information, blood and marrow samples, thus to advance the understanding of these syndromes, promote research and establish standards of care.

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National Cancer Institute Study

Investigation of Cancer Susceptibility in Inherited Bone Marrow Failure Syndromes (IBMFS). This is a National Cancer Institute study of the epidemiology and natural history of FA in patients and their families, focusing on potential complications such as leukemia or solid tumors, using questionnaires, thorough physical exams, laboratory studies, and age-appropriate cancer screening.

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  CRA registration number 868951724 RR 0001 © 2005 FA Canada