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  • Healthcare for Bleeding Disoders in Developing Nations is Improved | HemAware
    to treatment regardless of where they live says Mark W Skinner WFH president from 2004 to 2012 As part of the WFH s 50th anniversary a commitment has been made to accelerate the work to close the gap in care globally The quest to introduce improve and sustain care should not be limited by geo graphy economic wealth of a nation or the existing healthcare infrastructure For the past 50 years the WFH has been the cornerstone of global development in the care of bleeding disorders This work is carried out in collaboration with its national member organizations and a dedicated group of medical and lay volunteers WFH s programs are based on a comprehensive development model that aims to achieve sustainable care and treatment for all These programs such as the Global Alliance for Progress have benefited many patients in developing countries but there are still patients without access to even basic care To expand its continuum of care the WFH will launch the Cornerstone Initiative in 2013 to address needs where the gap in care is the greatest Through training and capacity building the WFH will lay the cornerstone for a solid foundation upon which the future of care development may occur around the world The Cornerstone Initiative will target countries at the lowest end of the economic spectrum Most of these countries have not been able to integrate care for bleeding disorders into national healthcare programs due to less developed infrastructure This initiative will work to develop and improve diagnosis capacity provide basic training in the management of bleeding disorders and strengthen patient organizations Examples of these efforts include coaching lay members on how to effectively manage a patient organization providing skills training for medical professionals and holding capacity building workshops Too many patients worldwide remain undiagnosed

    Original URL path: http://www.hemaware.org/story/global-concern (2016-02-18)
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  • WFH Celebrates 50th Anniversary | HemAware
    and organizational level This exchange of ideas has fostered new hemophilia societies and increased the capacity of existing ones The WFH s Hemophilia World Congress 2010 in Buenos Aires Argentina broke attendance records with more than 4 300 participants from 106 countries The WFH hopes 2012 will be even more successful by continuing to attract a cross section of the bleeding disorders community including patients and their families national patient organizations medical professionals and researchers As part of the WFH s 50th anniversary celebrations the plenary lectures during the WFH 2012 World Congress will focus on the international history of hemophilia and inherited bleeding disorder development They will also pay tribute to the many people in the bleeding disorders community who strive to improve treatment and care throughout the world In addition the medical program will include new scientific research and clinical trials detailing future advances in treatment products and clinical care The multidisciplinary track will cover holistic patient healthcare issues and lifestyle opportunities Women s and youth issues are also highlighted throughout the Congress During the WFH 2012 World Congress WFH invites all members of its global family to become a driving force for the future Approximately 75 of people with bleeding disorders still do not receive adequate care In areas of the world where it is a struggle to access even the most basic medical care bleeding disorders are debilitating and life threatening Your support of the work of the WFH and passion for achieving treatment for everyone with bleeding disorders worldwide will help lay a solid foundation for the next decade of global development to help close the gap in care This 50th anniversary provides the bleeding disorders community with an opportunity to pause reflect and commemorate all that has been done to improve diagnosis and treatment

    Original URL path: http://www.hemaware.org/story/wfh-celebrates-50th-anniversary (2016-02-18)
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  • NHF Wins Bid to Host 2016 WFH World Congress in Miami | HemAware
    congress which averages 5 000 attendees from more than 120 countries could break records in 2016 as approximately 20 000 people in the US have hemophilia and another 1 of the population has von Willebrand disease Combined with NHF s Annual Meeting we believe the 2016 will be the largest attended meeting pertaining to bleeding disorders in history said Val D Bias NHF CEO The congress draws international bleeding disorders experts who share the latest research and treatment findings with the global community Program tracks cover everything from laboratory sciences to nursing and dental Youth programs are also offered providing opportunities for the next generation of patients with bleeding disorders to get educated and involved in the issues affecting their peers in developed and developing countries Miami is the perfect host city for such an international meeting It has world class beaches international cuisine museums cultural events and performing arts The Miami International Airport is a gateway to all international locations Conveniently located hotels minimize travel to the convention center making access easy for those with mobility issues View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery Transplants Researcher Profiles Health Wellness Fitness Nutrition Taking Charge Pain Management Parenting Family Parenting Family Hemaware Jr Women Women s Bleeding Disorders Carriers Watchdog Insurance Blood Safety Advocacy Community HemAware Blogs HemAware Videos HemAware Photos Chapters in Action Global Spotlight Community Voices En Español Related Most Viewed 1 Rendezvous in Paris 2 Excitement Builds for WFH 2016 World Congress in Miami 3 Reaching Out to Enrich Within 4 World Hemophilia Day 2013 5 WFH s 50th Anniversary Video Series Documents History The Pros and Cons of Infusion Devices Pumping Iron Head Bleeds and Hemophilia

    Original URL path: http://www.hemaware.org/story/nhf-host-2016-wfh-world-congress-miami (2016-02-18)
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  • Reaching Out to Enrich Within | HemAware
    disorders and for patients to have better care and outcomes the results were so much more personal It is remarkable to see how patients and providers are so creative so committed and so positive in approaching chronic illness in the midst of other significant challenges This is without the resources that we so take for granted in North America World Federation of Hemophilia A patient in Botswana self infuses Butler s experiences highlight how the twinning partnership can help increase understanding within the US chapter communities of the great need to preserve the care that is already established and to work successfully with limited resources The WFH Twinning Program has provided established hemophilia organizations with experiences for their communities that they would not normally have at home This awareness has helped strengthen their own members commitment to protecting their own care The Arizona Hemophilia Association AHA joined the program this year During its initial assessment visit to Skopje Macedonia AHA saw concrete examples of why its involvement was so important I was very moved by the stories these people told of their struggles with hemophilia says Jessica Steed AHA board vice president There was so much raw emotion in the room as people talked about joint issues childcare problems and geographical problems with access to clotting factor The new Twinning Organization Partnership between the national hemophilia organization of Kyrgyzstan and the Mary M Gooley Hemophilia Center in Rochester New York was born out of the HTC twinning partnership between the HTC in Bishkek the Kyrgyz capital and the Rochester HTC This partnership will mainly focus on establishing a registry and a board of directors in Kyrgyzstan to help empower patients and caregivers After several prior twinning partnerships that proved rewarding Hemophilia of Georgia HOG is now partnering with the national hemophilia organization in Bolivia HOG s experiences with the WFH Twinning Program started in 1999 when it partnered with the national hemophilia organization in Chile That was followed by a partnership with Honduras in 2004 HOG s current twinning project will focus on developing a registry training the board of directors in areas such as fundraising and leadership plus coaching on medical relations and lobbying The WFH hopes to continue to expand the program through increased NHF chapter participation The next group of twins will be approved in October 2012 Our lives have been forever touched by the pain the courage the determination and the joy of the people we have met in Africa says Butler But pain is not inevitable it s conquerable The World Federation of Hemophilia envisions a day when treatment will be available for all children around the world Twinning is an important part of making this vision become reality says Mark Skinner WFH president Learn More For information on how to get involved with the WFH Twinning Program contact Anabella Zavagno WFH program coordinator azavagno wfh org WFH Twinning Partnerships in the United States Hemophilia Organization Twins Bolivia Georgia USA Macedonia Arizona USA Kyrgyzstan Rochester

    Original URL path: http://www.hemaware.org/story/reaching-out-enrich-within (2016-02-18)
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  • Rendezvous in Paris | HemAware
    promise of gene therapy The multidisciplinary track will discuss holistic approaches to healthcare and lifestyle changes for people with bleeding disorders Topics will include family perspectives and support psychosocial models in hemophilia aging with hemophilia and women s bleeding disorders Professional development workshops for dental professionals nurses musculoskeletal specialists and laboratory sciences will round out the program A Record Breaker The WFH 2010 World Congress in Buenos Aires Argentina had a record breaking attendance with more than 4 300 participants from 106 countries We hope the 2012 Congress will once again break attendance records by continuing to attract a cross section of the hemophilia community including people with hemophilia and their families national member organizations medical professionals and researchers Youth participation is strongly encouraged Several multidisciplinary sessions will address youth issues such as coping strategies and self care youth engagement and involvement and youth programs and concepts from both developing and developed countries In addition the Susan Skinner Memorial Fund scholarships will be awarded to two young women with bleeding disorders at the Congress Travel Plans All major airline carriers fly to either of the two international airports in Paris Charles de Gaulle CDG and Paris Orly Airport ORY with many direct flights on major carriers available from the US The Eurostar train is another option for international travelers with direct connections to London and Brussels And Paris is an ideal location to extend your trip into a European vacation Steps for Living Traveling When You Have a Bleeding Disorder Learn More wfhcongress2012 org View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery Transplants Researcher Profiles Health Wellness Fitness Nutrition Taking Charge Pain Management Parenting Family Parenting Family Hemaware Jr Women

    Original URL path: http://www.hemaware.org/story/rendezvous-paris (2016-02-18)
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  • World Federation of Hemophilia Reaches Out to Africa | HemAware
    linking teams from two geographically remote NMOs or hemophilia treatment centers typically from a developed and developing country to share skills and experience Educating Yourself to Educate Others For Cecilia gaining knowledge of hemophilia through the Kenya Haemophilia Association in Nairobi her NMO has greatly improved her son s situation Last year when Steve broke both legs and bled profusely after a traffic accident he was taken to a regional clinic The medical staff had no understanding of hemophilia or how to treat it Because Steve was able to explain hemophilia to medical providers they took the proper precautions to control his bleeding His mother then took him to a hospital to receive factor concentrates Knowing about hemophilia saved his life Cecilia says At Kenyatta National Hospital doctors treated the bleeds with factor donated through the WFH s Humanitarian Aid Program Many Kenyans are very poor and would not be able to make the payments for factor but when they are given factor at Kenyatta National Hospital by the WFH they don t pay a cent Cecilia says It is difficult to obtain factor for patients in Kenya she says because hemophilia is not a well known condition It s not like malaria where people get money from the government The news papers and TV talk about AIDS malaria and tuberculosis but not hemophilia so we need the WFH s help A priority of the WFH in Africa is to improve diagnosis through regional laboratory training workshops and by encouraging the development of national patient registries To date five sub Saharan African countries have patient registries The next step is to improve knowledge of the multidisciplinary approach to hemophilia through training programs in areas such as physical therapy and orthopedics Learn More WFH s Humanitarian Aid and Twinning programs US

    Original URL path: http://www.hemaware.org/story/african-outreach (2016-02-18)
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  • Global | HemAware
    WFH Regional Program Manager Asia Western Pacific 10 14 2010 The launch of the GAP project is good news that without doubt brings hope to tens of thousands of people with hemophilia living in China read more Hemophilia 2010 World Congress Record Numbers Attend By Craig T McEwen WFH Congress and Meetings Director 08 23 2010 The XXIX International Congress of the World Federation of Hemophilia was the most successful Hemophilia World Congress to date with more than 4 300 participants heading to Buenos Aires read more NHF Visits With Taiwan Hemophilia Association By Melanie Padgett Powers 08 09 2010 Hemophilia is one of the most expensive diseases to treat in Taiwan but the Hemophilia Association of Taiwan does not want its community to become complacent about its national health insurance benefits read more Beyond Our Borders By Rebecca A Clay 07 14 2010 Bleeding disorders organizations spread American phenomenon around the world read more Double Duty By Nicola Hope Programs Officer World Federation of Hemophilia 07 14 2010 The World Federation of Hemophilia s Twinning Program links emerging and established hemophilia organizations and treatment centers read more Hemophilia 2010 World Congress 07 12 2010 Stay updated on the events of the World Congress taking place now through the Daily News which offers on site coverage throughout the Congress read more A Global Effort to Treat Bleeding Disorders By Mark Skinner president World Federation of Hemophilia 04 21 2010 A child and his mother travel for a week by bus in Peru to visit a treatment center A young man from rural Armenia has a leg amputated the result of a lack of available factor concentrates read more World Hemophilia Day 2010 By Sarah Ford 02 18 2010 World Hemophilia Day 2010 which is celebrated on April 17 aims to

    Original URL path: http://www.hemaware.org/topics/global?page=1 (2016-02-18)
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  • Giving Back to the Bleeding Disorders Community | HemAware
    other disabilities Kurt made friends at that camp who remained his friends his entire life And he was allowed to go away from home for the first time He never forgot that experience Kurt really thought it was one of the most important things that happened to him How did Kurt s experience with camp affect your life About five years ago Kurt passed away He had contracted HIV and hepatitis C from contaminated factor But he had lived an extraordinary life He lived in California where I had moved He married and had a lovely daughter Hailee Dawn He worked as an executive chef But before he died he told me that he wanted me to do two things for him after his death One was to make sure his daughter made it through college He also said I ve never had such a profound experience as hemophilia camp I want you to do everything you can to make sure that every kid with a bleeding disorder who wants a camp experience can have one Since then I ve focused my energy on making that happen How are you working to fulfill Kurt s request I m president of the board of directors of the Hemophilia Foundation of Northern California HFNC We serve 47 counties in California and our camp is Camp Hemotion I like to think that I ve made a difference My husband Robert and I both have a deep commitment to philanthropy We are blessed in that we are financially comfortable I ve bequeathed a 1 million life insurance policy to be split between NHF and HFNC We decided that this was a gift that we could make that would be extremely beneficial to both organizations and we re extremely proud and happy to make it

    Original URL path: http://www.hemaware.org/story/giving-back-bleeding-disorders-community (2016-02-18)
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