NEPAL HEMOPHILIA SOCIETY
Nepal Hemophilia Society (NHS) was established in 1992 with an objective
to assist the persons with bleeding disorders in every possible way for
the control of their bleeding and find solution of the problems associated
with it. NHS is registered health related non-profit making NGO affiliated
to World Federation of Hemophilia.
Hemophilia is a congenital bleeding disorder caused by the deficiency
of the clotting factor in the blood. Hemophiliac bleeds continuously on
an injury. Bleeding if not controlled immediately can become a threat to
the normal functioning of the effected organs and even the life. A hemophiliac
lives from crisis to crisis. Internal bleeding in joints eventually results
in crippling of the patient by the time he steps his youth.
This disease is incurable but temporarily manageable. The only treatment
is infusion of blood, plasma or the anti-hemophilic factor at every instance
of the bleeding episode. The treatment is prohibitively costly. Physiotherapy
is also very important for person with hemophilia (PWH).
Activities carried out by NHS :
a) Dr. B. L. Bajracharya, Pediatrician ,Bangkok 1994
Only 35 Person with Hemophilia in the beginning.
Office at Nepal Red Cross Society, Blood Transfusion Services, KTM.
In 1996 grant assistance from German Embassy was used to purchase 2 Freeze
(one –20°C, one ordinary) physiotherapy equipments and medicine.
Mr. Shyam S. Panday went to Barcelona, Spain in 1995 and a good relation
was started with Hemophilia Center Barcelona and Hemophilia Society Spain.
Donation of a Centrifuge machine from Barcelona,Spain – 1996,
Handed Over to Nepal Red Cross Society Blood Transfusion Center.
Another Centrifuge machine was received from Victoria Eugenia Barcelona,
Spain in 1998 and handed over to NRCS BTS Kathmandu.
Participation in XXIII Hemophilia Congress at the Hague in 1998 with the
Support of World Federation of Hemophilia by Gen. Secretary D.R.Adhikari.
Met Brian o’ Mahoni President - WFH and Swedish Hemophilia Society,
(FBIS) members and proposed for twinning programme.
Dr. Ranjan P Singh then chairman Visited Denmark and talked with Mr. Terkel
Andersen President Danish Hemophilia Society and Swedish Hemophilia Society
members to start a project within twinning program
Training at International Hemophilia Training Center (IHTC):
b) Dr. M. P. Shrivastava, Ortho.surgeon - Israel 1998
c) Mr. Kedar P. Karanjeet, Lab.Technician ,Malmo,Sweden 1999
Visit of Executive Members from International Hemophilia Societies
Shyam S. Panday
Mr. Ashok B. Verma Gen. Secretary Hemophilia Federation India 1995
Terkel Anderson President Danish Hemophilia Society 1998
Mr. Patrik Ostberg Vice President, Birgitta Rehnby Exe. Director, Michel
Anderseen Youth committee chairman, Swedish Hemophilia Society and Mr.
Poul Eik Jorgensen Danish Hemophilia Society-1998 and 1999
L. A. Kelley President LIGHT USA, Dr. Tahir Shamsi Hematologist from Pakistan
,1999 and April 2000 for workshop.
Twinning program was approved by WFH and activities were started after
the visit of Birgitta Rehnby Exe. Director Swedish Hemophilia Society,
Patrik Ostberg Vice president FBIS and Gunilla Hogling Programme Officer
SHIA in February1999
Leadership training workshop Murcia, Spain 1999:
b.Mr. Suman Dhungana
First Hemophilia Care Unit Started at Bir Hospital Kathmandu 1999.
Current Situations :
Registry of Person with Hemophilia (nation wide)
Organizing Summer & winter camps, interaction program, Regional meetings
Publications SATHI, (7th issue) Hemoguide, Poster, I.D Card for PWH hemophilia
Counseling of Person with Hemophilia (P.W.H)
Management of F.F.P, Cryo, Precipitate Factor concentrates for treatment
Making plan and action for the advancement of Hemophilia care.
Good relation with W.F.H and other International Hemophilia Societies and
Diagnosis, counseling and psychosocial support to PWH and guardian.
Workshop on ''Medical Leadership for Hemophilia Care In Nepal'' on 21-22nd
April,2000 with support of LIGHT USA.
a. - Factor VIII - 40 +5
Person with Hemophilia (PWH) registered 110+7 in 1999.
- Factor IX - 12
- Factor X - 2
- Rest Undiagnosed
b. Life Member -120
c. Helping Member -1 (Japan)
d. Factor assay - Central
Lab/ TU Teaching Hospital
e. Hemophilia Care Unit
- Bir Hospital
f. F.F.P Cryo available
from NRCS, Blood Transfusion Center
g. Well equipped own office
h. Staff member - 2
i. 16 member Central Executive
committee, election in every two years
j. Limited stock of Factor
concentrate to tackle emergencies
k. Twining program with
Swedish Hemophilia Society for 1999 - 2000
l. Seven general assembly
conducted till now, where all PWH guardians and Executives meet and discuss
and find solution.
Future Plan :
Financial problem for sustainable development.
Well-equipped Hemophilia Care Centers with all facilities of hemophilia
Medical leader to start hemophilia clinic and handle Hemophilia Care Center.
Regular supply of factor concentrates and bloods components, FFP and Cryo
NHS Mailing Address :
To set up Office in its own building with support of Government and international
To set up a well equipped Hemophilia Care Center under Hematology Department
with skilled manpower and start hemophilia clinic.
Access to regular supply of Factor concentrates for every PWH.
Work for further advancement of hemophilia care.
Start fund raising program for sustainable development.
Seek Government support for treatment.
Training for medical persons.
Educational program for P.W.H /guardians.
Extend regional chapters.
Nepal Hemophilia Society
GPO Box: 6046,
Tel: 977-1- 472450 or 250608
Email: [email protected]
and [email protected]