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RANN Foundation – Raising Hepatitis B Awareness in India

This post is written by guest blogger Surender, who founded the RANN Foundation – a non-profit organization in India dedicated to educating women and children in a variety of topics – including hepatitis! 

India has one-fifth of the world’s population and carries a large proportion of the global burden of hepatitis B. India harbors 10 to 15 percent of the entire pool of hepatitis B carriers in the world, estimated to be 40 million HBV carriers. About 15 to 25 percent of HBsAg [the hepatitis B surface antigen] carriers are likely to suffer from cirrhosis and liver cancer and may die prematurely. Infections that occur during infancy and childhood have the greatest risk of becoming chronic. Of the 26 million infants born every year in India, approximately one million run the lifetime risk of developing chronic hepatitis B.

RANN Foundation focuses on developing the potential of women and girls to drive long-lasting equitable changes deeply focusing on SDGs mainly 3.3 aims to combat Viral Hepatitis by 2030.

We believe that the best way to unlock human potential is through the power of creative collaboration. That’s why we build partnerships between businesses, NGOs, governments, and individuals everywhere to work faster, leaner, and better; to find solutions that last; and to transform lives and communities from what they are today to what they can be, tomorrow.

My Story:

I was a Human Resource Executive in leading thermal power generation company in India. It was 2010 when during a blood donation camp, I got to know that I have Hepatitis B infection. I had never heard about hepatitis b before this incident. It was a shocking moment for me because I had never gone through any blood transfusion. I discussed with family and prepared all of them for screening of hepatitis B. The results were shocking to all of us as three members had infection of Hepatitis B in my family. It was mother to child transmission. I decided to leave my job, which was the only source of earning for me/family, & started education about the diseases in most vulnerable slums & villages in India. Being a survivor, it was my duty to protect future generations. I started my organization RANN Foundation which aims for awareness and prevention of viral hepatitis in India.

The social stigma surrounding Hepatitis B

I never hide my hepatitis B positive status. In fact, on every occasion, I share my story, but anyone who is living with hepatitis B cannot reveal his/her status due to discrimination in family & society. Discrimination and marginalization of people living with the chronic infection is a major concern that majorly impacts the lives of patients in India. Misconceptions and stigma attached to the disease often leads to marginalization and discrimination against patients. My fight against the disease focuses on multiple fronts – prevention of hepatitis B through vaccination camps of dropout children, conducting education programs on viral hepatitis in schools & urban slums, and providing psychosocial support to patients. Around 1.5 lakh deaths annually and almost 60 million Indians affected, Viral Hepatitis continues to be a serious public health concern. Most of the mortality due to viral hepatitis is attributed to hepatitis B and C, which are also known as silent killers as more than 80% of the infected aren’t aware of their infection.

Project NOhepDelhi: A School Awareness Program

Under Project NOhep Delhi a school awareness program is initiated by RANN Foundation in collaboration with Delhi Commission for Protection of Child Rights (Govt of Delhi) to educate students and teachers about viral hepatitis. The role of students in creating awareness and causing behavioral changes among the general population could go a long way in preventing the spread of viral Hepatitis.

The effort aimed at increasing students’ awareness and knowledge of hepatitis transmission and prevention should, therefore, be of special interest, especially among adolescents and young adults.

At this stage, most detrimental lifelong lifestyles and behaviors are adopted like substance use, alcoholism, etc. which are also a predisposing factor for the contraction of hepatitis infection and other infections. The school is a place where viral hepatitis information can get to adolescents and the teachers are potent instruments for giving out this information. Hence, the need to assess the knowledge of teachers & students about viral hepatitis.

Training of the Students: Senior girls are in the process of taking sessions on viral hepatitis to educate their juniors and other people living nearby their home. Girls were excited while giving their names for the training and showed dedication throughout the program.

Achievements

Project HASI:- RANN in collaboration with Cognizance (IIT- Roorkee) has taken the initiative to educate and empower the rural and urban-rural women of Uttarakhand. We launched the project in October 2018. So far, we have impacted and supported over 4,000 beneficiaries directly and over 1500 indirectly through our community trainers in Haryana & Uttarakhand.

NOhep With Max India Foundation :- We have successfully conducted immunization camps with Max India Foundation catering to 800 children and have provided with hepatitis B vaccinations.

Project NOhep Delhi :- RANN in collaboration with Delhi Commission for Protection of Child Rights (Govt. of Delhi) has taken the initiative to educate and empower the urban slums women & students of govt schools of New Delhi. We have started project Nohep Delhi in 17 govt schools – appox 35 thousand children) & 3 major slums to conduct awareness program on viral hepatitis. An intensive campaign for awareness generation will be held using different methodS such as health awareness camp, meeting, events, street plays, one to one communication, big events and sensitization with various groups of the society

Join the Conversation at the Hep B United Summit; Watch the Summit On Periscope!

hepbunited-btnThe annual Hep B United Summit, organized by the Hepatitis B Foundation, convenes in Washington D.C. from Wednesday, July 27 through Friday, July 29. National and local coalition partners, experts, stakeholders, and federal partners will meet to discuss how to increase hepatitis B testing and vaccination and improve access to care and treatment for individuals living with hepatitis B.

You can watch many of these important sessions LIVE on Periscope. You can also follow the conversation at the Summit on Twitter with #Hepbunite!

What is Periscope? Periscope broadcasts live video worldwide, in real time, so you can watch it from your computer (via web link) or a mobile device (via Periscope app). The app is free and available for your phone (iPhone and Android) and iPad or Tablet.

Wondering how to use Periscope to watch the Hep B United Summit in real time? There are two options:

  • If you’re using a PC, keep an eye out for a tweet from Hep B United and/or the Hepatitis B Foundation Twitter handles (@hepbunited or @hepbfoundation) that will contain a link to take you directly to the stream.
  • If you’re on the go, you can download the Periscope app for free from the App store or Google Play. You can either login using Twitter or directly with your phone number. Create your Periscope username and then follow hepbunited and hepbfoundation. We’ll be sure to follow you back! Here’s a great Periscope tutorial from Traffic Generation Café to get you started. You can also click on the link from your twitter app.

Here are the details on the sessions that will be broadcast on Periscope:

State of Hepatitis B
1:45-2:15 p.m. Wednesday: Brian McMahon, MD, will provide an update on the state of hepatitis B globally, via a GoToMeeting connection.

Click and watch later here. 

Hep B United and Know Hepatitis B Campaign Accomplishments
2:15-3 p.m. Wednesday:  Cynthia Jorgensen, DrPH, of the CDC’s Division of Viral Hepatitis will provide an update on Hep B United and the Know Hepatitis B campaign accomplishments of the past year.

Click and watch here.

HHS Town Hall on Hepatitis B
9:30 a.m. Thursday:  There will be a town hall conference with U.S. Department of Health and Human Services (HHS), live from HHS.

Click and watch here.

Breakout Session 1:

Developing New Hepatitis B Partnerships and Increasing Awareness
10:45-12:00 p.m. Friday: Contribute and learn about expanding outreach to new sectors (businesses, other at-risk communities, providers, etc.) and hepatitis B education strategies including social and ethnic media engagement. (Facilitators: Thaddeus Pham and Arcadi Kolchak)

Click and watch here.

Leveraging Data and Evaluating Impact
10:45-12:00 p.m. Friday: Discuss and collaborate on hepatitis B data collection and publication strategies, working with IRBs, and leveraging data to evaluate and promote coalition/organization impact. (Facilitators: Moon Chen and Chari Cohen)

Click and watch here.

Breakout Session 2:

Building and Sustaining Local Hepatitis B Coalitions
1:15-2:30 p.m. Friday: Develop strategies to sustain local hepatitis B coalitions and learn about engaging staff and local leadership. (Faciliators: Alex Shirreffs and Mohammad Abdul-Kadir)

Click and watch here.

Navigating Patients and Linkage to Care Strategies
1:15-2:30 p.m. Friday: Contribute to and learn about patient navigation strategies, including overcoming language barriers and working with community health workers and physician champions. (Facilitators: Nirah Johnson and Jane Pan)

Click and watch here.

 Not able to join the sessions with Periscope? Follow the conversation on Twitter using the #Hepbunite hashtag. Follow the events, RT and engage with event attendees and help us raise hepatitis B awareness in the U.S. and around the globe.

World Hepatitis Day is July 28th, and this Summit is a terrific opportunity to share with the world what we’re doing to help those living with hepatitis B in our communities.

Other popular hashtags for World Hepatitis Day, and to raise HBV awareness, include: #NOhep, #KnowHepB, #WorldHepDay, #WHD2016, #hepatitis, #hepatitisB, #HBV, and #hepB

Connect with, follow and engage with some of fellow partners on twitter to keep the HBV conversation going during the HBU Summit and World Hepatitis Day events, and beyond. Check out: @AAPCHOtweets, @AAHC_HOPEclinic, @AAHI_Info, @AAPInews, @apcaaz, @APIAHF, @ASIAOHIO, @CBWCHC, @CCACCInc, @cdchep, @cpacs, @HBIDC, @HepBFoundation, @HepBpolicy, @HepBProject, @HepBUnitedPhila, @HepFreeHawaii, @HHS_ViralHep, @ImmunizeAction, @LaoCenterMN, @MinorityHealth, @njhepb, @nemssf, @NVHR1, @nycHepB, @NYU_CSAAH, @sfhepbfree, @supportichs, @WhiteHouseAAPI,

Missing from the list? Contact the foundation at info@hepb.org to be added.

Don’t forget to join the World Hepatitis Alliance Thunderclap and register your World Hepatitis Day events.

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Still have questions? Email us at info@hepb.org and we’ll help you get started!

Visit the Hep B United and Hepatitis B Foundation websites for more information about hepatitis B and related programs.