Transcript Nepal Hemophilia Society

 Nepal Hemophilia Society : Established in 1992 in the leadership of
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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
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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
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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!