Bringing South Asian voices to CF LIVE: How patient feedback inspired a new CF LIVE
Register for CF LIVE: CF in South Asian communities
Every person with cystic fibrosis (CF) has their own story. But for many people from South Asian communities, there can be additional experiences shaped by culture, family, and awareness of the condition that aren't always reflected in wider conversations about CF.
Since 2023, our team at the Manchester Adult Cystic Fibrosis Centre has been running a series of virtual sessions based on the theme of living well with CF. Facilitated by colleagues from psychology, social work, and occupational therapy, the sessions give people with CF the chance to connect, share experiences, and learn from one another.
Last year, during South Asian Heritage Month, we decided to focus one of these sessions specifically for our South Asian patients. This came directly from patient feedback, as people told us they wanted the opportunity to connect with others from a similar cultural heritage while living with CF. To make the session as inclusive as possible, we asked other CF centres across the UK to share the invitation with their patients and families.
On 4 August 2025, Dr Maya Desai, a Trustee for Cystic Fibrosis Trust and retired consultant respiratory paediatrician, explored the question, "Is CF different in South Asian families?” with the group. Nadim Patel, who has CF, opened the session by discussing his own experiences and motivation in initiating the session and I co-facilitated the session with trainee clinical psychologist Ameera Iqbal. Altogether, 15 attendees with CF joined from three centres including ours.
What we talked about
Several important themes emerged during the discussion:
Connection and shared experiences: Participants valued learning from others with similar cultural backgrounds and experiences of living with CF.
Diagnosis and access to care: People discussed experiences of late diagnosis and barriers to testing and treatment.
Treatment and research equity: Conversations included access to CFTR modulators, clinical trials, and future therapies.
Awareness and understanding: Participants highlighted the need to improve understanding of CF within families, communities, and healthcare settings.
Emotional wellbeing and support: People spoke about isolation, stigma, and the importance of culturally relevant peer support.
Looking ahead
Feedback following the event showed a strong appetite for more educational sessions and more opportunities for people with CF from South Asian backgrounds to connect with one another.
That feedback inspired conversations with the involvement team at Cystic Fibrosis Trust about how to continue these important discussions, featuring more lived-experience voices and reaching a wider audience, including people with CF, parents of children with CF, family members, and CF professionals.
That's why the Trust is hosting a special CF LIVE event dedicated to South Asian experiences of CF.
The event, which will take place on 15 July at 7pm, reflects this year's South Asian Heritage Month theme, Unity in Diversity, and aims to increase awareness, knowledge, and understanding of CF across the South Asian community, while recognising that people's experiences of CF can differ because of their heritage.
Dr Maya Desai will again present "Is CF different in South Asian families?" We'll also hear about clinical trials at Cystic Fibrosis Trust and will be joined by a panel featuring two adults with CF and a parent of a child with CF, who will share their lived experiences.
Together, we'll discuss topics including:
- infection control and large family gatherings
- late diagnosis and diagnostic challenges
- diversity in clinical trials
- genetics and access to modulators
- religious festivals
- and much more.
The session is open to people from South Asian communities, as well as the wider CF community, parents, families, and CF professionals.
I'm delighted that a conversation which began because patients asked for a space to connect has grown into a national CF LIVE event. I hope you'll join us to hear from our speakers, learn from lived experiences, and be part of the conversation.
If you’re not sure if you can attend, you can register anyway to receive a post-event recording.
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