Changing the Conversation on Organ Donation in South Asian Communities
South Asians are disproportionately affected by organ failure and are more likely to need a transplant. Yet many South Asian communities remain underrepresented in organ donation, held back by misinformation, uncertainty around faith and eligibility, a lack of culturally relevant information, and conversations that often never happen within families.
This is not simply an awareness gap.
It is a trust gap.
Real change happens through trusted conversations
Traditional campaigns alone are not enough to shift behaviours around organ donation. Real change happens through trusted conversations, lived experiences, cultural understanding, and community-led action.
That is why we are working in partnership with NHS Blood and Transplant (NHSBT), grassroots organisations, healthcare leaders, and people with lived experience to transform how organ donation is understood, discussed, and normalised in South Asian communities across the UK.
We are not just raising awareness. We are building a movement to normalise conversations around organ donation in South Asian communities.
Creating long-term change
We are creating long-term change through four connected areas of work.
Trusted Conversations
We host webinars, listening spaces, and community conversations that bring together healthcare professionals, faith perspectives, lived experience voices, and communities to tackle myths, answer difficult questions, and build trust.
Our recent webinar, delivered in partnership with NHSBT and Apna, brought together national voices to discuss the realities of organ donation and transplantation in South Asian communities.
Culture & Creativity
We believe difficult conversations need new approaches. Our upcoming fashion and performance showcase will share stories of organ donation through fashion, dance, spoken word, and creativity, giving people impacted by organ donation a platform to tell their stories in ways that feel emotional, human, and culturally relevant.
This is awareness done differently.
Learn about the showcase →Storytelling for Change
Stories shift culture.
We are developing a new podcast series featuring powerful stories from recipients, donors, families, clinicians, and advocates, creating honest conversations that help people see themselves in this issue.
Podcast launching soonAction & Access
We are building an accessible Knowledge Hub to bring together trusted information, resources, lived experiences, and community tools, making it easier for individuals and families to understand organ donation and make informed decisions.
We are also supporting greater South Asian participation in initiatives such as the Transplant Games, helping increase visibility, representation, and community connection.
Creating lasting change
This work does not end with a project. We have established the first-ever South Asian Organ Donation Working Group, bringing together community leaders, organisations, healthcare partners, advocates, and lived experience voices to drive long-term change.
Together, we want to shift the conversation nationally, strengthen partnerships, improve culturally relevant engagement, and create a future where South Asian communities feel informed, represented, and empowered when it comes to organ donation.
Because one conversation can save a life.
But a movement can change outcomes for generations.
There are simple ways to make a difference
Whether you register your decision, talk to your family, or get involved in our work, every step helps change outcomes.
Join the Register
Register your decision on the NHS Organ Donor Register and help save lives. It only takes two minutes.
Register your decision →Talk to Your Family
Families will always be part of the conversation. Share your wishes and start the discussion with the people closest to you.
A conversation today makes the decision easier tomorrow.
Get Involved
Want to share your story, partner with us, volunteer, or join the South Asian Organ Donation Working Group? We'd love to hear from you.
Get in touch →Our Partners
This movement is built on collaboration with healthcare partners, faith organisations, community groups, and advocates across the country.
Organ Donation and South Asian Communities
spotlight the inequalities
South Asian Heritage Month is a time to celebrate, educate, and commemorate, but also to spotlight the inequalities South Asian communities continue to face. One of those inequalities is around organ donation: a topic that’s deeply personal, often misunderstood, and rarely talked about enough.
That’s why, on 30th July 2025, we brought together NHS staff, community advocates, faith voices, and lived experience speakers for a powerful online conversation. Hosted in partnership with APNA NHS and NHS Blood and Transplant, this webinar explored the cultural, religious, and systemic barriers that contribute to lower donation rates in South Asian communities, and how we can start to change that.
The session was hosted by Professor Habib Naqvi, Chief Executive of the NHS Race and Health Observatory, who led with empathy, clarity, and deep understanding of the wider health inequality landscape.
Watch the full webinar
“She made life easier for me by telling me what she wanted. That’s the gift she gave me.”
That was Mahmud Nawaz, sharing the story of his late wife, Sharon. When she died suddenly in 2004, he was in shock. But she’d told him, years earlier, that she wanted to be an organ donor.
“Had she not had that conversation with me, I would have said no.”
Because of that one conversation, Sharon saved four lives – including a one-year-old boy who received a liver transplant and is now thriving. Mahmud met him 21 years later.
“It didn’t just change their lives. It changed mine.”
“One in three people on the transplant list are from minority backgrounds. But we only make up 18% of the population.”
Professor Gurch Randhawa has spent decades working on equity in public health. He reminded us that organ donation is just the tip of a much larger issue.
He spoke about:
- The mistrust many people feel when approached about organ donation
- The assumptions made about culture, faith, and end-of-life decisions
- The power of lived experience in building trust where policy can’t reach
“We’re underrepresented on the opt-in register, but overrepresented on the opt-out list. That’s a warning bell we can’t ignore.”
“Why should a daughter donate to her father?”
That’s what Ekta Marwaha was asked when she decided to give a kidney to her dad. She didn’t listen.
“There were lots of misconceptions — that I wouldn’t be able to have another child, that a daughter shouldn’t donate to her father… but none of it was based on fact.”
Today, her father is thriving. Her daughter knows what organ donation is. And her family? They’ve seen the truth up close, and they’re talking about it now.
“We even celebrate two birthdays: his, and the day of the transplant.”
We don’t talk about death in our communities. We don’t talk about organ donation. We don’t ask. We don’t know.
But as Dr Binita Kane said during the closing of the event:
“This is a health inequality we can all help solve – for free – by just having a conversation.”
Three things you can do today
- Register your organ donation decision
www.organdonation.nhs.uk/register-your-decision - Talk to your family
Your decision only matters if they know it. - Watch & share the full webinar
These stories could be the start of someone else’s change.
The event was attended by 40+ professionals from across the NHS and community organisations, including NHS Blood and Transplant, APNA NHS, Jan Hindu Organ Donation, Muslim Doctors Cymru, British Sikh Nurses, and several Integrated Care Boards.
We are working with NHS BT to increase awareness of Organ Donation within South Asian Communities, If you would like to find out more or get involved contact us at Harvinder@southasianheritage.org.uk
