The Problem Being Addressed:
Over 60,000 children in Pakistan are suffering from thalassemia major, the most common fatal genetic disease in the world. Because of lack of knowledge or availability of tests in many areas of Pakistan, 5000 children are born with this disease each year. The weekly treatment needed by theses children to stay alive is a huge economic burden on affected families because the cost is often higher than their total income. Consequently, the majority of children do not live longer than adolescence. A second option to life-long supportive care is a cure, through bone marrow transplantation. Its cost is equivalent to a few years of supportive therapy, after which the child begins a normal life.
In 2008 Cure2Children (C2C) began a partnership with the National Institute for Blood Diseases (NIBD) in Karachi, the Pakistan Institute of Medical Sciences (PIMS), and SHIFA International Hospital in Islamabad; with the aim of providing financial and professional support for at least six transplants for each Pakistani institution that was willing to work with C2C under our mission objectives and principles, including:
- Providing family support throughout treatment, pre-treatment, and post-op recovery (usually a span of six months). This support includes a fully subsidized apartment close to the hospital, as well as screening and prevention for all family members to prevent new cases of thalassemia.
- Offering future transplants at a non-profit rate.
From January 2007 untill December 2010 this project received €400,000 of funding from the Cure2Children Foundation by way of grant from Fondazione Banca Monte Dei Paschi di Siena and donations from Italy.
In December 2010, this project was acknowledged by the Pakistani- Italian Government cooperation and received a long-term grant of 85 million PKR (approx. €700,000) for the “Cure and Prevention of Thalassemia Major project”, under the Pakistani Italian Debt-for-development Swap Agreement (PIDSA) program. As of April 2013 over 800 families have been registered and offered free screening; and a total of 90 children have undergone transplantation with results comparable to those obtainable in high-resource centers, Preventive counseling and screening of over 2000 extended family members of thalassemia children. However this high successes rate was obtained with a per-procedure-cost about ten times lower than that in rich countries. Additionally because local staff is now capable of conducting this cure locally with global standards of care, families to not have to leave their homes and villages to travel to Western countries for a cure. The family support program, still running, guarantees safe and adequate living conditions and an adherence to prescribed treatments after.
- In 2008, a two-bed BMT unit was developed at the Children Hospital of the Pakistan Institute of Medical Sciences (PIMS) in Islamabad by joint collaboration of C2C and PIMS. This unit, the first one of this kind in a government hospital in Pakistan, is also performing screening and prevention in extended families.
- Established national and international collaborations
- Bone marrow transplant of 94 children with results comparable to those obtained in high resource centres but with per-procedure-cost about ten times lower than that in rich countries.
- Preventive screening and counseling of over 2000 extended family members of Thalassemia major children.
- Effective Family support program for patient undergoing BMT. guarantees safe and adequate living conditions and an adherence to prescribed treatments after discharge from hospital for all patients and their loved ones
- Local staff is now capable of conducting this cure locally with global standards of care, families to not have to leave their homes and villages to travel to Western countries for a cure.
Project Admin Team:
Sajid Amin - Procurement and Human Resource Manager
Zulfiqar Haider- Finance manager
Fauzia Tabassum - Patient coordinator, BMT program
Faiza Shaukat - Patient Coordinator, Preventive screening program
Anam Siddique - Data Manager
Raja Abdullah Akhtar - Assistant Data Manager
Project Medical Team:
Dr. Naila Yaqub - Associate Professor BMT unit, Children Hospital PIMS.
Dr. Itrat Fatima
Dr. Sadaf Khalid
Dr. Sarah Khan
Dr. Anwar Khan
Naeem Akhtar - Nursing Coordinator
Azra Shaheen - Senior Staff Nurse
Abida Aslam - Senior Staff Nurse
Nabeela Hussain - Staff Nurse
Fatima Aslam - Satff Nurse
Saadia Hussain - Staff Nurse
Shahida Bibi - Staff Nurse
Adeela Bibi - Staff Nurse
Jennifer J.Das - Staff Nurse
Bashir Ahmed - Staff Nurse
Sulman Qamar - Staff Nurse
Qaisar Ali - Senior lab Technician
Zain Ahmed - Lab Technologist
Yasir - Lab technician
Ibrar Hussain - Phlebotomist
- Pakistani Italian Debit-for-development Swap Agreement (PIDSA)
- Pakistan Institute of Medical Sciences (PIMS), www.pims.gov.pk
- National Institute of Blood Disorders and Bone Marrow Transplantation, www.nibd.edu.pk
- Shifa International Hospital, www.shifa.com.pk
- Biocare Labs Ltd., http://biocarelabs.org
- Genetic Resource Centre of Pakistan
- Heartfile, www.heartfile.org
Cure2Children is a registered non-governmental organization, n. 4(2) EAINGO/2009 in Pakistan. Our National Tax number is 3394218-8.
You can donate directly to this project by sending a wire transfer to:
Account Name: Cure2children Foundation
Bank Name: Habib Bank Ltd.
Branch Address : Habib Bank, jinnah avenue, Islamabad
Swift Code: HABBPKKA007
Account #: 22067900408601