About Us

Director Statement for Debra Pakistan

On 26th January 2015 at 12:05 AM, my beautiful daughter Haram arrived into our world and changed its landscape forever. My baby girl, who I prayed and hoped for nine long and painful months, was finally in my arms, eternally occupying the chambers of my heart.
As I cradled my daughter with a heart overflowing with intense love and gratitude, an ache simultaneously swept through my core, as not only were Haram’s cries hoarse, but blisters had begun to develop on her tiny two fingers that even doctors at first had failed to understand, yet alone explain. It was to be another four and a half months before I received Haram’s diagnosis,
but in the meantime, my bundle of love had filled my life with such joy, peace and contentment that I never knew had known existed. It was when I visited the dermatologist with Haram, and was informed that my daughter’s damaged nails would never regrow,
however, that the familiar and unwelcome ache from her birth returned with utmost force. I remember the words’ Junctional Epidermolysis Bullosa,’ glaring back at me from the prescription as I left the appointment, not knowing what this meant, or what it would entail. 

Faiza Ambreen

The first thing that I did as I returned home was to google these alien words, only to be devastated by what I read. Although I fought to provide my daughter with the best quality of life possible throughout her three short years of life, by conducting extensive personal research and reading, my little girl ultimately succumbed to airway complications from JEB and departed from this life on 9th February 2018. It is this personal battle with Epidermolysis Bullosa and my daughter’s suffering, which has instilled in me the fortitude and determination to continue the fight against what is often described by medical professionals, as ‘the worst disease you’ve never heard of.’ I had promised Harram in her lifetime that I will do all in my power to minimize the pain of children and adults living with this condition, thus transforming my voluntary work into a passionate purpose, one which I believe that God has chosen for me. As the director of Debra Pakistan, I endeavor to provide high-quality care to those living with E.B. whilst ensuring that patients can soon access state of the art medical and social support systems. With a team of dedicated volunteers, we are committed to establishing Debra Pakistan as the first national platform that gives voice to the needs and problems of the EB community. The extremely difficult experience with my daughter, and recognition of the great gaps in knowledge about the cause, diagnosis, treatment and cure of such a rare disease, has cemented my resolve to help improve the lives of people living with Epidermolysis Bullosa in Pakistan.
Debra Pakistan’s action plan encompasses various crucial aspects of EB awareness. This focuses greatly upon educating parents and medical professionals through liaising with both national and international platforms, approaching government authorities for support, research and development to find sustainable solutions to reoccurring complications associated with EB, and the ultimate aim of finding a cure. We also hope to encourage genetic testing in families with a history of genetic disorders, and to introduce health policy reforms that will address and deliver the much needed care that the EB community in Pakistan so urgently requires and deserves. Whilst we are aware of the tremendous challenges we face in working towards our goals, we are confident that with our combined efforts we shall bring a significant change for sufferers and their families.
I leave you with inspirational words from Abu Bakr R.A:
“Taking pains to remove the pains of others is the true essence of generosity.”
May this journey of ours, where our pain to remove the pains of others succeed and God willing, pave the path towards a painless future.

“Taking pains to remove the pains of others is the true essence of generosity.”

At Debra Pakistan we are committed to providing care and support to those who suffer from EB and their families. Our dynamic and diverse team understand that taking pains to remove the pain of others is the true essence of generosity, and it is compassion and empathy that ultimately drives our efforts. As the number of children being born with EB increases each year, the need for patient support has become all the more pertinent. Our dedicated team strives to help those living with such a painful condition to thrive amidst their constant challenges, and seeks to facilitate easy access to clinical and social care.

Our Team

Governing Body

Faiza Ambreen

Faiza Ambreen

Managing Director

Sumaiya Iqbal Choudary

Sumaiya Iqbal Choudary

Chief Development Officer

Head of Creative Media

Muhammad Hamza Rana

Muhammad Hamza Rana

Chief Operating Officer

Fizza Akbar

Fizza Akbar

Genetic Counselor

Clinical Advisory board

Dr. Irfan Jeeva

Dr. Irfan Jeeva

Assistant Professor

Section of Ophthalmology, Department of Surgery

Aga Khan University Hospital, Karachi

Muhammad Irfan Anwar

Dr. Muhammad Irfan Anwar

MBBS, Dip. in Dermatology,

FCPS (DERMA)

PNS Shifa Hospital, Karachi

Dr. Lamees Mehmood Malik

Dr. Lamees Mehmood Malik

Associate Professor

MBBS, FCPS (Dermatology)

Department of Dermatology

Allama Iqbal Medical College, Lahore

Dr. Rabia Ghafoor

Dr. Rabia Ghafoor

Assistant Professor

MBBS, FCPS (Dermatology)

Jinnah Postgraduate Medical Center, Karachi

Dr. Salman Kirmani

Dr. Salman Kirmani

Associate Professor

Department of Pediatrics & Child Health

Aga Khan University Hospital, Karachi

Prof. Dr. Muhammad Tariq Rasheed

Prof. Dr. Muhammad Tariq Rasheed

Head of Department of Dermatology

MBBS, FCPS (Dermatology)

Allama Iqbal Medical College, Lahore

Dr. Shahzadi Resham

Dr. Shahzadi Resham

Assistant Professor

MBBS, FCPS, MD

Consultant in Pediatrics & Pediatric Palliative Medicine

Pediatric Hematologist & Oncologist

Department of Pediatrics & Child Health

Gulnaz Tariq

Gulnaz Tariq

Associate Professor

Manager

Wound care Sheikh Khalifa Medical City Abu Dhabi

President IIWCG

President WUWHS

Director ISTAP

Dr. Sadia Tabassum

Dr Saadia Tabassum

Assistant professor Dermatology

Department of Medicine

The Aga Khan university hospital Karachi