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Annual Report 2006-07, Society for Hemophilia Care-SHC India

The Cause:
Children are the most important segment of our society. Sometimes nature is not kind with them. Some children are born with some genetic disorders and have to live with it. One such condition is Hemophilia where the child has uncontrolled bleeds mostly into joints. This is because their blood does not clot/coagulate. The treatment is fortunately very much available but very expensive and hence beyond the reach of thousands of parents. Lack of treatment means joint damage & physical disability. In India (unlike the developed world) most of these children have to face disabilities in their childhood. They drop out of the schools, get stigmatized and become life long dependents. They face discrimination.


If the awareness and treatment are accessible and affordable a child will not be disabled & can receive education in schools & colleges and contribute to the betterment of our society and country.

SHC India was registered on October 10 2005 under the Societies Act. In a short period of 18 months it has achieved a very humble success. This has been possible due to its dynamic & well experienced Governing Board & Advisory Board coming from all over the country.

Mission: "Nobody should die or become disabled when the treatment is available"

SHC Mission focus areas are:

E ducation & Awareness about Hemophilia, its adversaries and prevention. Encourage the environment to prevent HIV/AIDS, Hepatitis B & C in persons having hemophilia. Prevention of disability in such persons;

A dvocacy for safer, ethical and affordable Hemophilia Care. Focusing on the need and bringing a positive change in the attitude of the government authorities and having them recognise the need of providing Hemophilia Care;

S upport & have partnerships in making SHC vision a reality by 2015;

Y outh empowerment and making them self-reliant.

Vision: "Hemophilia Care is within reach regardless of ability to pay"

SHC India Policy: SHC India is a public funded charity & works with complete transparency, work ethics & accountability towards its donors and other partners through qualitative management and effective communication. It also encourages an environment under which the public has the opportunity to analyse the result of their support. We believe that a donor invests for social returns in making quality change in the lives of most needy.

SHC India Promise: We at SHC India do hereby promise to accomplish our Vision & Mission in complete transparency with our donors & affected community.

(A). Operational Activities:

For any newly founded organization setting up the basic minimum infrastructure withcommitted workers is the backbone. Due to the reputation & selfless commitment of office bearers SHC India:

  • Obtained registration under section 12A and 80 G of the Income Tax Act record time.
  • Set up a small office in Amberhai Village Dwarka, New Delhi.
  • Obtained Registration under the Indian Drugs Act for procurement & distribution of life saving medicines called Anti Hemophilia Factor for use of persons suffering from hemophilia.
  • Registered under Societies Registration Act, 1860 of Govt. of India.

(B). Hemophilia Awareness:

Hemophilia awareness is very minimal amongst the general public. Even the medical doctors sometimes fear giving treatment to a child suffering from hemophilia. Therefore, spreading awareness, conducting patients' camps/meets and training of doctors is very important. SHC India:

  • Conducted patients' meets and provided psycho-social support and awareness lectures on hemophilia care. About 500 patients and their parents attended patients' seminar in Delhi, Jammu & Patna.
  • Published awareness material for general public on hemophilia & seeking support from them
  • Awareness campaign on Radio FM 104 consecutively for 5 days did a remarkable job by reaching thousands of listeners & raising queries with us. Very valuable news on hemophilia & SHC India was telecast on Aajtak, Zee News, CNN IBN, DD News etc. besides Times of India, Hindustan Times & other leading newspapers.
  • Launched SHC website reflecting about our vision and mission and activities. It needs improvement in contents & regular updation which is in process.
  • Organised the 1st Hemophilia Mini Marathon in Delhi and created hemophilia awareness with more than 15 educational institutions, people of all age groups from West and South Delhi, Gurgaon and parts of Punjab, Haryana & U.P. participating. Half page coverage appeared in TOI & other newspapers.
  • Obtained E. Tax exemption from the office of the Commissioner of E. Tax and organized a mass awareness programme on hemophilia followed by fund raising Live Ghazal Concert by Shri Jagjit Singh.

(C). Making life saving treatment accessible & affordable:

  • Coordinated with Hemophilia Society of Bihar in setting 1st Hemophilia Hospital in Patna with support of Sh. Shatrughan Sinha & Government of Bihar.
  • Provides on regular basis the life saving medicine to hemophilia patients at half the market prices in Delhi, Bihar, J & K, Punjab, Haryana, U.P. & Rajasthan. Initiatives into making these medicines available in Govt. Hospitals have been taken in Bihar, J & K and Delhi.
  • Under Save a Family programme SHC India organized financial support for the family of late Sh. Rajesh Singh. His parents approached us after he died of hemophilia at a young age of 24 years. His wife has now started earning her livelihood with the financial support from SHC.
  • Under Economic Rehabilitation provided financial & technical support to Shri. Vikas Jain in setting up a Cyber Centre. He is now getting on his feet.

(D). Financial Highlights:

For any new organization first few years are quite crucial for its sustainability. Having systems & basic infrastructure in place & above all placing committed workers take a lot of time and resources. Nevertheless our operational expenses at 18% have been considerably lesser compared to norms of over 50% in the first few years. In the coming years our scale of activities in resource mobilization, awareness and delivery of health care have to increase to reflect the viability factors. Plans in this direction will be implemented in the years to come.

How the Rupee came: (in lakhs), Provisional figures as Audit is in process
Donations & Sponsorships : Rs.18.33 62%
Proceeds from Events : Rs.03.92 13%
Contributions for Medicines : Rs.07.47 25%
TOTAL : Rs.29.72 100%

How the Rupee was spent: (in lakhs), Provisional figures as Audit is in process
Awareness & education Rs.10.11 34%
Procurement of Medicines Rs.10.05 34%
Operational Expenses Rs.05.42 18%
Economic Rehabilitation Rs.01.12 04%
Surplus Carried forward Rs.03.12 10%
TOTAL : Rs.29.72 100%

Full details of Audited Financial Statements can be viewed on our website in 30 days time.

(E). Support from Corporate Houses & individual donors:
We wish to put on record the support we have received from various Corporates/ multinational corporations like ONGC, HDFC Bank, UTI Bank, Radisson, New Delhi, Baxter India, Kingfisher Airlines etc and individual donors for our above initiatives.

"My first Impression of SHC India was that of a group of highly dedicated and experienced professionals coming together for a noble cause.
In a country where even the well educated have not heard of a disease that renders children physically challenged, promoting awareness of the ways and means for treatment needs a strong initiative.
I am glad I have been able to lend a helping hand to SHC India. I have been able to start a dialogue within my organization on the need to provide a helping hand to SHC, in terms of voluntary and financial help. If professionals like me can come together and devote even an hour every week from their work schedules to its cause, we would never see people dying when treatment is available."

Sapan Shah, American Express Bank

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