What Parathyroid Uk does

Parathyroid UK is a UK-based non-profit patient support and advocacy organization founded in July 2005 by Liz Glenister (CEO) following her own experience with post-surgical hypoparathyroidism after thyroid cancer surgery in 1992. Originally named HPTH UK, it is the only organization in the UK and Ireland dedicated to improving the lives of people affected by parathyroid conditions, including hypoparathyroidism, hyperparathyroidism, and related disorders of post-surgical, genetic, autoimmune, congenital, and idiopathic origin. The organization serves approximately 2,000 members across the UK and Ireland, supported by a small team of 1-10 employees and a network of medical advisors.

Name

Parathyroid Uk

Legal name

Parathyroid UK

Website

https://parathyroiduk.org

Company type

Private

Founded year

2005

Operating status

Operating

Headcount range

1–10 employees

Short description

Parathyroid UK is a UK and Ireland non-profit founded in 2005 that provides information, peer support, and advocacy for nearly 2,000 patients living with parathyroid conditions, serving as the sole dedicated patient organization in its disease area.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212), Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Patient advocacy
• Rare disease support
• Health information services
• Patient education resources
• Parathyroid support

Headquarters

HQ city

East Grinstead

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations: Parathyroid UK accepts donations from individuals, supporters, and industry partners to fund their operations and advocacy work.
2. Shop/Merchandise: The organization operates a shop selling merchandise and emergency ID items.
3. Membership: Free membership is offered to patients and caregivers, providing access to support groups, information, and resources.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

Parathyroid UK is a non-profit patient support organization that provides information, peer support, and advocacy services for people affected by hypoparathyroidism, hyperparathyroidism, and related parathyroid conditions in the UK and Ireland. It operates a telephone helpline, private Facebook support groups, patient information leaflets, a self-help guide, clinical guidelines for healthcare professionals, and an annual World Hypopara Awareness Day reaching patients in over 30 countries. The organization also facilitates patient participation in clinical trials and campaigns for improved diagnosis, treatment, and care pathways.

Product overview

Parathyroid UK is a patient support organization offering a unified portfolio of support services for people affected by parathyroid conditions. The core offering consists of peer support communities (Facebook groups), patient education materials (leaflets, self-help guides, videos, podcasts), clinical guidelines for healthcare professionals, and emergency ID items. These services are designed to work together to provide comprehensive support from diagnosis through ongoing management, supported by a telephone helpline and membership program.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Support Groups

Quantifiable outcome

• Post-surgical hypoparathyroidism risk reduced from 27-30% to 7-10%
• +2 more outcomes

Named customers11 records

Segments5 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Twelve partnerships are on record, tiered core and minor.

• Amolyt PharmacoreStrategic or Co-development Partner · 31 October 2023Parathyroid UK partnered with Amolyt Pharma on the CALYPSO study testing eneboparatide, a new investigational PTH medication. Study centers in Norwich, Leicester, and Oxford were involved.
• Ascendis PharmacoreStrategic or Co-development PartnerParathyroid UK worked with Ascendis Pharma on Yorvipath (palopegteriparatide), a new parathyroid hormone treatment. The MHRA approved Yorvipath in April 2024 for chronic hypoparathyroidism in adults. Parathyroid UK participated in NICE approval process as stakeholders.
• Sheffield University (Mr. Saba Balasubramanian)coreStrategic or Co-development PartnerParathyroid UK worked closely with surgeon Saba Balasubramanian and his team at Sheffield University on the NIFTy trial studying near-infrared fluorescence imaging to reduce parathyroid damage during thyroid surgery.
• TakedaminorGTM or Marketing PartnerParathyroid UK partnered with Takeda to provide helpful tips and hints for day-to-day living with hypoparathyroidism to support World Hypopara Day.
• Ascendis Pharma (Individual Funding Request)minorGTM or Marketing PartnerPatients may access Yorvipath via Individual Funding Request if their case warrants it. Consultant endocrinologist must apply to Ascendis Pharma.
• Society for Endocrinology (SfE)coreOthersParathyroid UK is affiliated with Society for Endocrinology as an Affiliated Patient Support Group, participating in SfE BES conferences and workshops.
• European Society of Endocrinology (ESE)coreOthersParathyroid UK has affiliate status with ESE, with their information endorsed by the organization.
• BAETS (British Association of Endocrine and Thyroid Surgeons)coreOthersBAETS endorses Parathyroid UK patient information. Parathyroid UK participates in BAETS annual meetings.
• British Thyroid AssociationcoreOthersBritish Thyroid Association endorses Parathyroid UK patient information materials.
• Rare Diseases UKminorOthersParathyroid UK is a member of Rare Diseases UK, the national campaign for people with rare diseases.
• Genetic Alliance UKminorOthersParathyroid UK is a member of Genetic Alliance UK, the alliance of patient organizations supporting those affected by genetic conditions.
• National VoicesminorOthersParathyroid UK is a member of National Voices, the leading coalition of health and social care charities in England.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Others

• National Voices: Leading coalition of health and social care charities in England; Parathyroid UK is a member. Comparable as a peer in policy advocacy and collective representation across UK health charities.
• Rare Diseases UK: National UK campaign coalition for people with rare diseases, of which Parathyroid UK is itself a member organization. Relevant as an ecosystem/umbrella peer — represents the collective advocacy layer Parathyroid UK plugs into for policy influence.
• Genetic Alliance UK: UK alliance of patient organizations supporting those with genetic conditions; Parathyroid UK is a member. Comparable as an enabling/coalition peer given shared focus on patient representation and policy advocacy for rare and genetic conditions.
• Ascendis Pharma: Commercial pharma partner that co-developed Yorvipath (palopegteriparatide), the first PTH-replacement therapy approved for chronic hypoparathyroidism in adults (MHRA, April 2024). Relevant as an ecosystem peer given Parathyroid UK's role in advocacy and NICE stakeholder engagement for the product.
• Society for Endocrinology (SfE): UK professional endocrinology society that affiliates Parathyroid UK as a patient support group. Relevant as a peer relationship representing the medical-professional infrastructure the charity depends on for credibility and conference access.

Direct peers

• Addison's Disease Self-Help Group (ADSHG): UK-based small patient support charity focused on a rare endocrine condition. Closely comparable operating model — helpline, peer support groups, GP-facing resources, and partnerships with SfE/ESE-affiliated medical advisors.
• British Thyroid Foundation: UK patient charity for thyroid conditions, many of which (e.g., thyroidectomy) are clinically linked to parathyroid conditions. Same model: patient leaflets, support network, and engagement with endocrine surgery bodies including BAETS.
• Thyroid UK: UK patient-focused charity covering thyroid disorders, with substantial overlap in patient population (post-thyroid surgery patients are at risk of parathyroid injury). Operates with similar awareness, support, and information dissemination model.
• The Pituitary Foundation: UK-based endocrine patient support charity. Directly comparable as a small, disease-specific endocrine patient advocacy organization offering helpline, peer support, patient information leaflets, and medical-professional resources in an adjacent endocrine niche.

Broad incumbents

• Royal Osteoporosis Society (formerly National Osteoporosis Society): Larger UK charity focused on a bone-density condition closely related to calcium/parathyroid metabolism. Comparable in mission framing around calcium homeostasis but operates at a meaningfully larger scale and broader scope.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookparathyroiduk.org/resources/facebook-groups
• LinkedInlinkedin.com/company/parathyroid-uk

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Parathyroid Uk