Power In Me Foundation is a National Trust with CSR1, 80G and 12A certification. We are dedicated for the welfare of rare disease patients and their families. Power In Me is the official podcast of Power In Me Foundation that is aimed tocreate awareness and to be a resource for professionals and common people in understanding rare diseases and other health related information in an easy way.

The following episode is focused on the discovery of new rare disease “Perinatal Lethal Serpinopathy” by Dr. Shagun Agarwal, Additional Professor & Incharge, Head Department of Medical Genetics, Nizam’s Institute ofMedical Sciences, Hyderabad and her team.  

Manoj Kumar Singh, National President of Power In Me Foundation talks to Dr. Shagun on their journey of discovery and reporting of this novel disease and many other aspects of early detection of rare diseases.

The questions covered are:

1.      Symptoms of Perinatal Lethal Serpinopathy?

2.    How the disease was discovered?

3.    When couples should talk to geneticist?

4.    Government Initiatives on rare disease?

5.     Centre of Excellence  of Rare Diseases?

6.     Costs of genetic tests?

7.     What caused those mutations?

8.    Can Perinatal Lethal Serpinopathy affect Adultstoo?

9.     And many more.

Here is the list of 13 centres of Excellence of Rare Disease in India:

1.       AIIMS, Delhi

2.      Maulana Azad Medical College, Delhi

3.       SanjayGandhi Post Graduate Institute of Medical Sciences, Lucknow

4.      Postgraduate Institute of Medical Education and Research (PGIMER), Chandigarh.

5.      CDFD with Nizam Institute of Medical Sciences, Hyderabad

6.     King Edward (VII) Memorial Hospital and Seth Gordhandas Sunderdas Medical College, Mumbai.

7.     Institute of Post- Graduate MedicalEducation and Research, Kolkata

8.   Centre for Human Genetics (CHG)  with Indira Gandhi Hospital, Bangaluru

9.    AIIMS, Jodhpur

10.    Institute of Child Health and Hospital for Children, Egmore, Chennai

11.   Government Medical College, Thiruvananthapuram 

12.   AIIMS, Bhopal

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