Most rare disease patients don’t go undiagnosed because medicine isn’t advanced enough.
They go undiagnosed because nobody is fighting hard enough to be heard.
Ann Harding has spent over 14 years changing that.
Working at the intersection of personal grief and public advocacy, Ann went deep inside a healthcare system that had little room for rare conditions — watching patients suffer through misdiagnoses, watching families navigate emergencies alone, watching a disease that could kill people remain largely invisible to the professionals meant to treat it.
That experience became a calling.
The impact of her work speaks for itself. She joined HAE UK as a trustee and helped build it from its foundation into one of the UK’s leading patient advocacy charities. As Chair, she led national awareness campaigns, secured television coverage, organised events at the Houses of Parliament, and got educational resources into GP surgeries and A&E departments across the country. She strengthened the charity’s finances, grew its reach, and kept every decision pointed at one goal — finding a cure.
But what makes Ann’s contribution truly extraordinary isn’t the organisation she built. It’s that she built it while living the reality she was trying to change.
Ann’s daughter has H.A.E. — a rare genetic condition causing severe, unpredictable swelling throughout the body, including the airway. Attacks can be fatal. For decades, there was no cure. Ann watched her child endure hospital visits, misdiagnoses, and terrifying emergencies. And rather than breaking her, it sharpened her resolve. She understood exactly what patients and families were facing because she was one of them.
She puts it plainly:
“Patients who once lived in fear of painful, life threatening attacks are now symptom free. What once seemed impossible is now a reality.”
Because it is. Gene therapy trials supported through years of fundraising, advocacy, and clinical collaboration championed by Ann and the HAE UK team have now delivered a genuine cure. Two years ago, when Ann was a Novi finalist, that breakthrough still felt distant. Today, it is transforming lives including her daughter’s.
Female leadership runs through everything she has built. HAE UK’s executive team and board reflect that commitment, and around 70 percent of its wider network patients, researchers, clinicians and advocates are women. The charity is also funding a female clinical psychology student at Staffordshire University researching the mental health impact of H.A.E., ensuring emotional wellbeing receives the same attention as physical care.
Ann isn’t just improving how patients experience a rare disease.
She’s raising the standard for what determined, board-level leadership can actually achieve.
This is why Ann Harding is our 2025 Novi Women On Boards of the Year winner.
The kind of leadership that rarely makes headlines but absolutely should. Not built from ambition alone, but from love, lived experience, and a refusal to give up. Ann did not wait for change to happen. She became the force that created it.
✨ Know a woman who is quietly changing the game in her field? The 2026 Novi Awards nominations are open. It is free to nominate and takes less than 5 minutes.
Nominations close 15th June. Don’t wait.
