PAO is recognized by NICE
Pregnancy Associated Osteoporosis (PAO) is recognized in NICE's Osteoporosis Guideline Update published on 29th July 2026
7/29/20264 min read
Pregnancy Associated Osteoporosis (PAO) is recognised for the first time by the National Institute for Clinical Excellence (NICE)
Press Release Published: 29th July 2026
Today, NICE has today published part 1 of its new Osteoporosis Guideline update. For the first time, this recognises the rare condition Pregnancy Associated Osteoporosis (PAO) as a rare type of Osteoporosis and further recognises the charity Pregnancy Associated Osteoporosis (PAO) UK.
For our community at Pregnancy Associated Osteoporosis UK (PAO UK), this inclusion marks an important step towards one of our key goals: raising awareness of this rare and little known type of osteoporosis.
NICE report they are updating the osteoporosis guideline and quality standard to bring all NICE recommendations into one comprehensive resource. The revised guidance will be delivered in two parts:
Part 1 (published today): Covers identifying adults who should be assessed for fragility fracture risk, methods of risk assessment, identifying vertebral fractures, treatment criteria and repeat risk assessment (timing and methods) for people not receiving treatment.
Part 2 (in future): Covers risk assessment for people with a learning disability, treatment (pharmacological, exercise and calcium and vitamin D), monitoring of treatment and treatment pauses, incorporating recommendations from a new Multiple Technology Appraisal (MTA) to create a single set of pharmacological treatment guidelines.
A new milestone for the PAO UK community
This new updated guideline and ongoing PAO UK clinical guideline work reflects the strength of collaboration and shows what can happen when lived experience and scientific expertise come together.
PAO UK Co-Chairs, Professor Stuart Ralston and Karen Ann Whitehead MBE, both served as NICE Osteoporosis guideline and quality standard update committee members for the past three and a half years, Professor Ralston as a medical expert and Karen as a committee patient laymember. PAO UK was also registered as a NICE Expert Stakeholder Organisation and provided feedback with input from our Charity Trustees and our Medical and Scientific Committee.
Karen Ann Whitehead MBE, PAO UK Co-Chair said:
“As someone who has PAO myself, I personally know how difficult and traumatic it can be having this rare type of a more widely-known condition, struggling to first obtain diagnosis and then requiring information, care and support. This causes terrible physical and mental health impact and trauma. Over many years, I’ve repeatedly had so many different healthcare professionals tell me that they have never heard of Pregnancy Associated Osteoporosis-- that it doesn’t exist as a condition and that you can’t get osteoporosis around the time of pregnancy. Having PAO recognized like this by NICE helps validate this is a real condition and helps raise awareness. It is a small, but powerful, change that can hopefully help lead to improved diagnosis and improved care for women in real need. Many of our PAO-diagnosed mums experience numerous ongoing painful and debilitating fractures, before they are eventually diagnosed, because the condition is so little known.”
You can read more PAO mums' stories here on our charity website.
Dr Sarah Hardcastle, chair of PAO UK’s medical and scientific committee, said:
“We know that the diagnosis of PAO is often delayed, and that some women are seen by multiple healthcare professionals before the diagnosis is considered.”
PAO as a Rare Type of Osteoporosis
Over recent years, PAO volunteers and trustees have repeatedly presented and written about the need for improved maternity care for PAO Mums. These include:
Spotlight and Voices Articles for Journal ‘The Practising Midwife’, by Trustees Kathryn Berg and Karen Ann Whitehead MBE.
Articles for the BMJ by Trustee and PAO mother Tessa Gooding and PAO Medical & Scientific Committee member and clinician and PAO mother Kirsten Furley.
A past speciality seminar to the Maternity & Midwifery Forum and further regional presentations.
This awareness-raising regarding the condition has included highlighting the physical and mental health impact of the condition and the maternity trauma experienced by PAO mothers. Medics for Rare Disease, for example, explains that with rare conditions, “awareness and understanding remain low in both the public and medical communities. This lack of recognition often makes the journey physically, mentally, and emotionally exhausting.”
The UK Government’s Rare Disease Action Plan, England Rare Diseases Action Plan 2026: main report - GOV.UK, state that priorities include helping patients get a final diagnosis faster, increased awareness of rare diseases, and improved access to specialist care, treatment and drugs. PM Andy Burnham’s Government also says that improving maternity care is a priority, with the new Healthcare Secretary Yvette Cooper stating on X, “I’m looking forward to working urgently to improve maternity services…”.
Looking ahead
PAO UK, as a registered Stakeholder Organisation, has nominated Co-Chairs Professor Stuart Ralston and Karen Ann Whitehead MBE as Medical and Patient Experts for the next Part 2 Osteoporosis Guideline Update and will also be further commenting as an Expert Stakeholder Organisation.
PAO UK is a newly-registered UK healthcare charity, which was announced in the House of Commons on registration and welcomed by MPs of all parties. It has just completed its Year 1 Annual Return and Report to the Charity Commission, which advises that an important aim of the charity is to support and promote the development of a new detailed clinical guideline specifically for the management of PAO, given that none exists. This new guideline is being supervised by the charity Medical and Scientific Committee, working with a wider group of experts and using a Delphi approach. This group is led by Professor Stuart Ralston and Dr Sarah Hardcastle and comprises clinicians and researchers, with representation from PAO diagnosed mothers who are also healthcare professionals.
Karen Ann Whitehead MBE is a Public and Patient Voice (PPV) Member of NHS England Rare Disease Action Group (RDAG), and PAO UK has commented on Government recent Rare Disease consultations such as those regarding Rare Disease Treatments and Genetic Testing. PAO UK will once again be participating in the UK’s 2026 Rare Summit in Cambridge in October, raising awareness of this rare type of Osteoporosis with an exhibition display and research poster.
PAO UK will be launching a new Pregnancy Associated Osteoporosis Awareness Day on the 9th of September 2026, via participation in the Society for Endocrinology’s “Osteoporosis Conference 2026”. This date 9/9 is important as it represents the nine months of pregnancy that sets PAO apart from other forms of osteoporosis. Dr Sarah Hardcastle will be speaking about PAO at the conference on this day, and Karen Ann Whitehead MBE will be raising awareness via an exhibition display.
Support our work
Please help us raise awareness and share information regarding PAO.
We are a small, all-volunteer charity, with no paid staff, making a big difference for women with PAO. Your donation helps us continue vital awareness work, including our #MeasureThatMum campaign, and ensures more mothers receive the understanding, care and support they need.
For further information or media support, please email info@pao.org.uk.