Campaign by Hemophilia Federation (India)
**Nagaraju was born with hemophilia with factor VIII deficiency.** He lives with his mother in Hyderabad. His father passed away when he was very young. This led to his mom being the sole earning member of the family. His mother is uneducated. She works as a tailor. She has a very unstable income. **They manage to make ends meet with great difficulty.** **Hemophilia A, also called factor VIII deficiency, is a genetic disorder caused by missing or defective factor VIII, a clotting protein.** People with hemophilia A bleed longer than other people. Bleeding can occur internally, into joints and muscles, or externally, from minor cuts, dental procedures or trauma. **Currently, there is no cure for hemophilia.** The main method of treatment for hemophilia A is to intravenously infuse a concentrated FVIII product called clotting factor or simply factor through a vein in the arm or a port in the chest. Living with a disease that has no cure, Nagaraju always has to be ready for life threatening situations. On one instance **he got affected with a peritoneal bleed - an internal bleeding.** He was admitted in the Little Star's Children Hospital. A large quantity of factor VIII was required to control his bleeding immediately.** The cost of this requirement crossed over a lakh.** His mother had no means of arranging this amount. She was helpless and was at a complete loss of options. Seeing their situation the hospital referred them to Hemophilia Federation. **Hemophilia Federation with the support of The Hans Foundation provided 5012 IUs of factor VIII which covers close to Rs.60000/- as partial support.** Nagaraju was treated by infusing the required units. His internal bleeding was controlled and he recovered well. He is now registered with the Hyderabad chapter of the Hemophilia society. **Your help can many more patients like Nagaraju. You can donate so that the poor patients who suffer from hemophilia can get support and ave a normal life. You can give with confidence because every program listed is [GIVEASSURED](https://www.giveindia.org/giveassured).**
Hemophilia Foundation helps underprivileged Hemophilic patients timely, sufficient and appropriate treatment. One unit of donation to this program helps cover the cost of 100 units of Factor VIII for poor hemophilia patients Hemophilia A, also called factor VIII deficiency is a genetic disorder caused by missing or defective factor VIII, a clotting protein. People with hemophilia A bleed longer than other people. Bleeding can occur internally, into joints and muscles, or externally, from minor cuts, dental procedures or trauma. Hemophilia patients who can't afford timely, sufficient and appropriate treatment could end up with consequences such as permanent disability, HIV/AIDS, Hepatitis B/C infections, and even death. Unfortunately many patients suffering from hemophilia belong to Below Poverty Line (BPL) families. Due to the lifelong, incurable nature and very expensive management of the disorder Antihemophilic Factor (AHF), it becomes difficult for families to meet expenses of the same. The requirement for AHF can be even more in case of severe bleeding and surgeries. This is not a one-time expenditure and necessity occurs whenever an injury may occur. Most men from such families are factory-workers, daily wage earners, rickshaw pullers, vegetable vendors, or household help.. Hemophilia Foundation aims to help such needy patients. They maintain a list of the most deserving patients based on the severity of the condition as well as family income. AHF is allocated to beneficiaries as and when required The AHF units are procured and stored at the head office in Delhi. Whenever a local chapter is short of enough units, they send a request to the head office. The required units are sent to the chapter. Once the units are received, the patients are notified for collection. They take it to the hospital for transfusion. In cases where the volume from a certain area is high, the chapter sends it to the hospital and notifies the patients, who then directly go to the hospital for the transfusion. A second installment is given only after receiving satisfactory proof that the first installment of AHF was properly utilized. In case of death of a beneficiary or underutilized medicine by another patient, a new beneficiary is identified to be helped. Hemophilia is a life-long condition and there is no limit to the treatment needed. A hemophilia patient may injure himself/herself on an average of 3-4 times a month. Hemophilia factor VIII costs Rs.12/- per unit. A minimum of 500-1000 units of AHF is required by a haemophilic patient each times for a minor injury. If the injury is critical then it depends on the severity. Hemophilia Federation has presence through 79 chapters across all states. When you donate to this program you give a patient suffering from a life-threatening disease hope to live a normal life.
The Organization was started in 1983 by Ashok Verma who was himself a hemophilia patient, to alleviate the sufferings of thousands of hemophiliacs in the country. Mr. Vikash C. Goyal President, HFI, is a Banglore-based businessman and a father of a hemophiliac son who passed away because of hemophilia. He very passionate about this cause and for the welfare of the suffering hemophiliacs of India. Work done by the organization -Provided 5000 ius each of free AHF factor VIII, IX, Fieba to 55 beneficiaries from all over India Provided education support to 500 children with hemophilia from all over India Provided 3000 ius each of factor VIII & IX to 720 beneficiaries from all over India Providing support for Carrier Detection and Prenatal Diagnosis for 120 girls and women from hemophiliac families from all over India In 2013, Hemophilia Federation (India) was awarded the India NGO Awards by the EdelGive Foundation & The Resource Alliance Finalist and in 2017, Project Heal A Soul was awarded the Bureaucracy Today Winner by Bureaucracy Today.
Hemophilia Federation (India)
Beneficiary Charity
Rohit Nair
Organiser
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