Sadia Haqnawaz has been supporting women since 2010; after the loss of her baby daughter to Autosomal Recessive Polycystic Kidney Disease (ARPKD). She supports Pakistani women whose babies receive a poor diagnosis due to genetic anomalies resulting from consanguineous marriages; being in such a marriage herself and being the child of parents who are first cousins. Sadia works to raise awareness of the risks involved with these cultural practices by sharing her lived experience; having not only lost her baby, but nieces and nephews to ARPKD.

Sadia has worked with Public Health Birmingham and the NHS to sensitively raise awareness of the options parents have regarding their pregnancy and care, to ensure they are supported in making an informed choice. Sadia believes in the facilitation of challenging conversations to ensure these topics are discussed and parents are aware of the rights they have to receiving the best care. By talking openly she hopes other people will join the discussion and share their experiences. 
Sadia is a firm believer of Patient and Public Involvement (PPI) and is a member of The Hilda’s at the Dame Hilda Lloyd network, working to involve women in research. She has worked as a PPI for various organisations. Sadia is also a member of the Maternity Voices Partnership, ensuring women feel safe to speak out about their care and challenge service providers when needed. 

Sadia has worked for various organisations to bring the voice of Pakistani women to research and service improvement. Her work has led her onto a PhD exploring improving the care for women experiencing pregnancy loss and baby loss, at the University of Leicester. 
 

Sadia said: 
“For the first time I feel like I am being listened to, I need to ensure that listening results in action and is not merely tokenistic. I believe in patient safety and the right to information regarding choices. I am delighted to become a member of the Family Voices Group and will work to ensure that minority voices are represented, so that care is improved for women and babies.”

Other projects Sadia is involved with:

• Patient and public contributor (PPI) since 2021
• PhD student since 2022 ‘Muslim Parents’ Experiences of Ending Pregnancies due to Fetal Anomalies’
• Birmingham and Solihull ICB – Infant Mortality -Taskforce; cousin marriage and genetic testing
• The Hilda’s PPI group at University of Birmingham BRC – women’s health and maternity safety themes
• Sands Baby Loss charity – South Asian Roundtable member
• Perinatal Pathology Service User Group NHS
• Maternity and Neonatal Independent Senior Advocate – Evaluation PPI group
• DReAMED Project; recognising and treating women before they become unwell – PPI

Sadia also works with the following communities and groups:

• Working with Pakistani women in Birmingham. Reaching underserved Muslim communities nationally.
• Working with families accessing genetic services and those suffering loss due to consanguinity.