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Newsletter_Jan2008Head

 
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IN THIS ISSUE

 

Features Articles

 

 

Planning and Guidance

 

 

Stages and Milestone

 

 

From Child to Adult

 

 

“Letting Go”

 

Sidebar Articles

 

 

Independence Checklist

 

 

“Over the Bridge” Book Synopsis

 

 

Spanning a Lifetime

 

Online Resources

 

 

References

 

 

Related Resources

 

 

Conference Corner

 

 

 

References

  1. Haemophilia UK website. Inhibitors. Available at: http://www.haemophilia.org.uk/publications/inhibitorsfactsheet.html. Accessed August 13, 2007.
  2. DiMichele DM. A Primer: Inhibitors in Haemophilia. Available at: http://www.haemophilia.org.za/HemInhib.htm. Accessed August 13, 2007.
  3. Canadian Hemophilia Society website. The Complications of Hemophilia. Available at: http://www.hemophilia.ca/en/2.1.9.php#1. Accessed August 13, 2007.
  4. National Hemophilia Foundation website. The Challenge of Inhibitors. Available at: http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?
    menuid=227&contentid=424&rptname=inhibitors     & http://www.hemophilia.org/NHFWeb/Resource/StaticPages/menu0/menu2/menu26/
    menu201/menu227/inhibitor_session.pdf.     Accessed August 13, 2007.
  5. Kempton CL. Journal of Thromb & Haemostasis. 2006:4;2576-2581.
  6. Roberts HR, et al. Safety profile of recombinant factor VIIa. Seminars in Haemotology. 2004:41;101-108.
  7. Erlich, et al. Haemophilia. 2002:8;83-90.
  8. Astermark, et al. Current use of by-passing agents in Europe in the management of acute bleeds in patients with haemophilia and inhibitors. Haemophilia . 2007:13;38-45.
  9. Soucie JM, Erdman DD, Evatt BL, et al. Investigation of porcine parvovirus among person with hemophilia receiving Hyate:C procine factor VIII concentrate. Transfusion. 2000 June:40(6);708-711.
  10. ClinicalTrials.gov Web site. Available at: http://clinicaltrials.gov/ct/show/NCT00245245?order=1. Accessed August 31, 2007.
  11. Negrier C, et al. Thrombo Haemost. 1997:77;1113-1119.
  12. NovoSeven website. Available at: http://www.novonordisk.com/. Accessed October 3, 2007.
  13. Lee, et al. International Workshop on Immune Tolerance Induction: Consensus Recommendations. Haemophilia . 2007:13;7(1); 1- 22.
  14. A randomized comparison of bypassing agents in hemophilia complicated

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Related Resources

Transition Resources

  1. http://www.kelleycom.com/archives.html: Chronic medical disorders like hemophilia can present such challenges. Parents feel overwhelmed because they often lack the educational tools needed. LA Kelley Communications was founded on the belief that anyone facing hardship, adversity or challenges when given the right tools can overcome, triumph, and even grow in character and confidence. Find out more about The Parent Empowerment Newsletter (PEN) published by LA Kelley Communications, Inc. Filled with great information for parents, it is available in hard copy or electronically. It is free to patients, families, hospitals, non-profit organizations and corporate partners.
  2. http://www.hemophiliagalaxy.com/patients/index.html: Hemophilia Galaxy website is sponsored by Baxter BioScience. This website links the reader to a vast amount of information about hemophilia and it management, stages of growth and development as related to the condition, community resources, healthy decision with hemophilia, health insurance information and many resources. Hemophilia toolkits for persons with hemophilia and family are also described with directions for acquiring them.
  3. http://www.livingwithhaemophilia.com: Living with Hemophilia website is sponsored by Bayer. This website has lots of information about living with the condition of hemophilia, including a special section on Transition. Specific guidance is also addressed about issues at home and on the go. Guest contributors offer experience and support for families of hemophilia.
  4. http://www.hemophiliavillage.com: Wyeth sponsors the Hemophilia Village website. It provides information about hemophilia and its treatment as well as programs and services available to the hemophilia community. Materials specifically focused on transition to college and higher education is available.

Additional Internet Resources

  1. Self Advocacy/Encouraging Independent Health Behavior
    • www.savethechildren.org.uk/rightonline/ Save the Children's web pages for young people, on young people's rights around the world
    • www.after16.org.uk for young people in the UK who have an impairment or disability, with advice on opportunities and services available for when they leave school
  2. Sexual Health
    • www.brook.org.uk provides sexual health advice
    • www.fpa.org.uk working to improve the sexual health and reproductive rights of people throughout the UK , website provides advice, statistics and facts
    • www.mariestopes.org.uk provides information and advice on its services and local centers in the UK
    • www.likeitis.org.uk gives young people access to information about all aspects of sex education and teenage life
  3. Psychological Support
    • www.youngminds.org.uk provides information and resources on key topics to improve the mental health of all children and young people
    • www.childline.co.uk provides help, advice and information on policy and campaigns
  4. Educational and Vocational Planning
    • www.connexions.gov.uk information and advice designed for 13 to 19 year olds living in England
    • www.after16.org.uk for young people in the UK who have an impairment or disability, with advice on opportunities and services available for when they leave school
    • www.skill.org.uk (National Bureau for Students with Disabilities) provides information on opportunities for young people and adults with any kind of disability in post-16 education, training and employment across the UK
  5. Health and Lifestyle
  6. General Transition Websites
  7. Health-related Sites for Young People
  8. Hemophilia Resources
  9. Hepatitis Resources
  10. Arthritis Resources
  11. Dental Resources

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Conference Corner

April 2008

    23-26 April 2008
    XX Congreso Internacional del Grupo CLAHT – VIII Congreso Argentino del Grupo CAHT
    (Grupo Cooperativo Latinoamericano de Hemostasia y Trombosis)
    (Grupo Cooperativo Argentino de Hemostasia y Trombosis)
    Buenos Aires, Argentina
    Email: grupoclaht@gmail.com
    Internet: www.congresoclaht-caht2008.com

May 2008

June 2008

July 2008

September 2008

November 2008

    13-15 November 2008
    60th Annual National Hemophilia Foundation Meeting
    Denver, Colorado, USA

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