Nepal Hemophilia Society : Established in 1992 in the leadership of Dr. Ranjan Singh Affiliation: World Federation of Hemophilia- WFH (1992) and National Federation of Disabled Nepal-NFDN (2006) 5 chapters: Bhaktapur, Chitwan, Parsa, Sunsari and Kaski (Pokhara) 1 contact place in Far western Part of the country -Kailai Two Hemophilia Care unit: Bir Hospital, Kathmandu Medical college Civil Service Hospital just started Hematology service with ward ,is the first in Nepal. It is a green signal for hemophilia diagnosis and well treatment. Persons with Hemophilia, Their parents and Medical persons actively involved to develop the Nepal Hemophilia Society. Vision of NHS Comprehensive care and treatment of Hemophilia for their life of dignity. Mission of NHS Provide hemophilia care and treatment services to PWHs so that they recover to their normal health situation. Slogan of NHS Factor Friends: Free of Pains lxdf]lkmlnsx?sf] cg'e"lt, kL8faf6 d'lQm Graphical Representation of Total no of PWHS each year 60 49 44 Number of PWHs 50 41 47 38 37 40 34 32 27 30 Total PWHs Factor VIII Factor IX Others 26 20 10 8 1 4 6 1 4 9 7 1 0 0 2008 2009 2010 Years 2011 2012 Total no. of PWHs registered in NHS 400 The total no. of PWHS registered in NHS on the basis of Factor deficiency 358 No. of PWHs 350 300 250 200 The total no. of PWHS registered in NHS on the basis of Factor deficiency 150 100 50 0 55 8 1 1 1 1 Factor Factor Factor Factor Factor Factor VWB VIII IX X II V XIII Factor deficiency The total no of PWHs died each year No of PWh died each year 8 7 7 6 6 5 4 4 3 No of PWh died each year 3 2 2 1 0 2008 2009 2010 2011 2012 Support and Cooperation to NHS World Federation of Hemophilia (WFH) Swedish Hemophilia Society (FBIS) MyRight (SHIA) Save One Life Inc. National Federation of Disabled Nepal (NFDN) Blood Transfusion Service Centre Blood Donors Association Nepal (BLODAN) Activities of NHS Providing transfusion service through the care unit. Managing the primary information in local chapter for out side the capital. Providing Scholarship to 35 by MyRight (Shia) Program and 73 by Save One Life program per year Skill Training to Youth UNCRPD training to PWHs and their parents Organizing blood donation program 2 times in a year by Mothers Committee Organizing youth camp, parents camp and Children with mothers camp Continue……… …..continue Interaction meeting with Medical persons in Central Hospitals, Medical college and Regional Hospitals time to time in a year Publishing educational materials like Fact for Healthcare Professionals, Hemo-guide, Facts for family, Hemophilia Direction etc. Publishing a newsletter ‘Hemo-sight’ 3 times a year. Interaction meeting with Chapters and Board members minimum 2 times in a Year Problems of NHS Not Actual Diagnosis service of Hemophilia No Coagulation Test service in Nepal for treatment process of Hemophilia as a result we have been lost our PWHs in many cases. No Hemophilia Friendly Physiotherapy service Government has not included to Hemophilia in the category of disability till now. Lack of awareness to general public. Not adequate knowledge of Hemophilia in medical professionals too. No access of Anti hemophilic Factor and not affordable too. Not sufficient blood component like Plasma and Cryoprecipitate) Unavailability of Plasma and Cryoprecipitate in out of valley . No initiation from Government to provide medicine and treatment of Hemophilia Challenges To find out the whole number of PWHs Increasing number of PWHs day by day To extend the service of hemophilia all over the country Awareness Timely Diagnosis Treatment Severe disability Recognize to hemophilia in the state duty Normal life of PWH Some Photos of PWHs Thank You!