Prepared by: Bed Raj DhunganaSupported by: Pabita Bhattarai

Gayatri mangranti

Nepal Hemophilia Society

Brief Description of NHS

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 -KailaiTwo Hemophilia Care unit: Bir Hospital, Kathmandu Medical collegeCivil 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.

Mission of NHSProvide 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

Vision of NHSComprehensive care and treatment of Hemophilia for their life of dignity.

Graphical Representation of Total no of PWHS each year

2008 2009 2010 2011 20120

10

20

30

40

50

60

41

49

3734

47

32

44

27 26

38

84 6 7 9

1 14

1 0

Total PWHsFactor VIIIFactor IXOthers

Years

Num

ber

of P

WH

s

Total no. of PWHs registered in NHS

Factor VIII

Factor IX

Factor X

Factor II

Factor V

Factor XIII

VWB0

50

100

150

200

250

300

350

400358

55

8 1 1 1 1

The total no. of PWHS registered in NHS on the basis of Factor deficiency

The total no. of PWHS reg-istered in NHS on the basis of Factor deficiency

Factor deficiency

No.

of

PW

Hs

The total no of PWHs died each year

2008 2009 2010 2011 20120

1

2

3

4

5

6

7

8

3

2

6

4

7

No of PWh died each year

No of PWh died each year

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)

Support and Cooperation to NHS

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 yearSkill Training to YouthUNCRPD training to PWHs and their parentsOrganizing blood donation program 2 times in a year by

Mothers CommitteeOrganizing 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 dayTo extend the service of hemophilia all over the countryAwarenessTimely DiagnosisTreatment Severe disability Recognize to hemophilia in the state dutyNormal life of PWH

Some Photos of PWHs

Click icon to add picture

Thank You!