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

You Can Follow Power In Me Foundation on Our Social Media Handles too.

1. Linkedin- https://www.linkedin.com/company/power-in-me-foundation/?viewAsMember=true

2. Instagram- https://www.instagram.com/powerinmefoundation/

3. Youtube- https://www.youtube.com/@powerinmefoundation

4. Facebook- https://www.facebook.com/Powerinmefoundation/

For Volunteering, Pro Bono Work and Membership with our Organization you can email us at mpowerinme@gmail.com and Contact at +91-8851537816.

A podcast episode of interview where Mr. Manoj Kumar Singh, Trustee & National President of Power In Me Foundation talks to Chocolate Entrepreneur Ms. Shifa Saeed on her just starting journey of a solopreneur. And about her chocolate venture Melts. This is an initiative by Power In Me Foundation to support women entrepreneurs into their journey and be their support in making their business profitable. Shifa talks about her love for chocolate, new flavors, initial requirements for setting up chocolate business, customization and customer acquisition. She tells how she used her home appliances and made only very few buys to start her work. It covered buying molds and raw materials like chocolate with flavoring ingredients. She also gave tips for others if they wish to start with Homemade chocolate business.

Order for chocolate is taken from Instagram (@meltschocholate__) .

https://www.instagram.com/meltschocholate__?igsh=NTBtNGsxeWF4eDV6

And WhatsApp- 9545045442

You can connect and support Power In Me Foundation too in our efforts. Follow us on our website- www.powerinme.org

Instagram- https://www.instagram.com/powerinmefoundation

Youtube- https://www.youtube.com/@powerinmefoundation

Facebook- https://www.facebook.com/Powerinmefoundation

Power In Me Foundation is working for the welfare and rights of People with rare diseases. With focus objectives of Health, Education, and Livelihood generation. Along with environmental issues and rural development. We arecontinuously working towards fulfilling our objectives and bring positive social transformation. As a part of our GOOD HEALTH Project, in this special series, we are interviewing experts from different field with focus onHealth and Lifestyle. It is 9th Episode in the series.

This episode is focused around Disability Evaluation in Bleeding Disorder Hemophilia, Sickle Cell and Thalassemia as per Rights Of Person With Disability Act 2016.

A talk with Dr. Rajesh Singh Vaish, District Nodal of Hemoglobinopathies & Hemophilia program by NHM & Head of Pathology at District Hospital & Trauma Centre, Singrauli, M. P. Here Trustee & National President of Power In Me Foundation Mr. Manoj Kumar Singh discusses with him about the Disability Evaluation of three bleeding disorders included into Rights of Persons with Disability Act, 2016. The act got enforced in 2017-18 granting much needed Rights to patients of these bleeding disorders who face various limitations aka disabilities due to their rare conditions. Dr. Rajesh Sir gives a brief into the guidelines helping other doctors into understanding the evaluation process for these bleeding disorders. #powerinmefoundation #disabilityact2016 #disabilityevaluation #bleedingdisorders #hemophilia #sicklecellanemia #thalassemia #hemoglobinopathies #socialawareness #ngo #equalrights #equalopportunity #healthcare #india #delhi #bangalore #jaipur #bhopal #mumbai #indore #lucknow #varanasi