Rare Disease Day 2026: Equity for Rare

Rare Disease Day 2026 centred on equity, calling for fair access to diagnosis, treatment and care for the 300+ million people worldwide (including 3.5 million in the UK) living with rare conditions. The day was organised by the Genetic Alliance UK and as founding members, we took part and attended.

Equity means addressing individual, specialised needs rather than treating everyone the same, aiming to end diagnostic delays and disparities in health outcomes.

We would like to thank the many of you who took part across the UK sharing your stories.

You can still join the ongoing campaign by sharing personal experiences of inequity. Share your story info@nervetumours.org.uk

Key initiatives for 2026 include:

• Targeted Action: Genetic Alliance UK highlights five key calls: better data, sustainable treatment access, stronger research, improved coordination, and a firm, future-proofed strategy.
• Global and National Advocacy: Eurordis globally, and the Genetic Alliance UK nationally, are championing a shift from awareness to action, focusing on overcoming social and financial barriers to healthcare, as noted by Rare Disease Day.
• Early Diagnosis: Efforts aim to reduce the "diagnostic odyssey", often over 5 years, through better, faster and more equitable access to genetic testing.
• Personalized Support: Emphasizing that equity requires different approaches based on unique needs, moving beyond just equality to provide tailored, holistic support, as discussed in the Equity Toolkit.

Events Across The UK

One of the ways that Rare Disease Day is marked in the UK, is through national parliamentary receptions in Westminster, Holyrood and the Senedd, all organised by the Genetic Alliance. These receptions are an opportunity for the rare conditions community to come together and for parliamentarians to learn how they can drive changes in policy to improve the lives of people affected by rare conditions.

Rare Disease Day, Parliamentary Events

The Parliamentary Events started off with a reception in the Scottish Parliament, hosted by Bob Doris MSP, followed by a reception in Westminster, attended by our Charity Director, Karen Cockburn. 

In Wales, Professor Meena Upadhyaya, one of our Trustees and a member of our Medical Advisory Board, attended the reception taking place at the Senedd.

Rare Disease Day, Westminster

On 24 February, approximately 150 members of the rare community met for the annual Rare Disease Day reception, on the Terrace Pavilion at Westminster, to launch the Equity for Rare report. The event was chaired by Peter Dowd, MP, Chair of the All Party Parliamentary Group on Genetic, Rare and Undiagnosed Conditions.

Speakers included:

• Alison Pettitt, who gave a moving and deeply personal speech about her son, Timmy, who lived with Superior Mesenteric Artery Syndrome (SMAS) and how this impacted their family.
• Sophie Mira-Roberts, who highlighted her work with the vascular compression syndrome community and the health inequalities faced by people with rare conditions. She spoke passionately about the need to ensure healthcare systems respond consistently with compassion and validation of symptoms, even when answers aren’t clear. 
• Sue Farrington, who spoke about the NICE Quality Standard for Rare Diseases, saying that the Quality Standard has a clear purpose to define what good care should look like for every person living with a rare condition in the UK, and to create a meaningful, measurable way of improving and tracking the quality of that care.
• Nick Meade, Chief Executive of the Genetic Alliance, who presented the findings of the Equity for Rare report, launching their work to gather multi-stakeholder views on the future of rare policy in the UK. He also challenged policy makers in the room to work to ensure our healthcare systems are more equitable for rare conditions.

Conferences and Public Events

The Northern Ireland Rare Disease Partnership (NIRDP) chaired an International Conference on Rare Disease. The conference brought together people affected by rare conditions, advocates, researchers, medical professionals and policymakers for a day of talks and networking.

On Rare Disease Day itself, the 10th edition of Genetics Matter, Newcastle’s flagship Rare Disease Day event, took place at the Great North Museum, Hancock. This free public engagement event, hosted by Katarzyna Pirog, showcased local genetic research, featuring hands-on experiments. The event for those aged 12 years and above, was aimed at those affected with a rare condition and their families and friends.

Nick Meade Chief Executive of the Genetic Alliance UK in his own words:

"Rare Disease Day 2026 delivered real results for our community, thanks to the hard work of our members, people living with rare conditions, and the wider stakeholder community. Our report 'Equity and Rare', secured immediate impact with the announcement by the minister for rare disease that work would begin to include rare conditions in NHS England's monitoring for equity, CORE20PLUS5. With this and the NICE Quality Standard on Rare Diseases published, these are two powerful new tools for our community to advocate with. Even so, our focus remains on securing a future for the UK Rare Diseases Framework. We're looking forward to collaborating with our members to achieve this in 2026."

Nerve Tumours UK Community: Equity for Rare

We are especially grateful to:

• NTUK Youth Ambassador Georgia
• NTUK ambassador Emily Owen
• Blogger and visible difference advocate Oliver Bromley
• Podcaster and NTUK supporter Beth
• Awareness campaigner Sophia

Their openness, insight and advocacy helps to shine a light on the realities of living with NF1, NF2 and SWN, inspiring others across the community to get involved. Thanks to them all for using their voices to raise awareness, support others and drive meaningful change. Equity for Rare!

Their stories and insights were shared in our news section and on our social media channels. 

Future Goals:

To deliver a fairer healthcare system, Genetic Alliance UK has called on the UK and devolved governments to:

1. Deliver a UK-wide map of all 7,000 rare conditions via funded rare conditions registries.
2. Close the evidence gap through fair and balanced research investment.
3. Mandate system-wide accountability to stress-test policies against rare conditions.
4. Embed rare conditions into mainstream healthcare delivery.
5. Commit to a bold successor to the UK Rare Diseases Framework.

Whilst the Specialist NF Nurse/ Advisor Network at Nerve Tumours UK has grown, people in the NF community still face unequal access, and depending on where they live, it remains a postcode lottery. Equity of Care for everyone who is diagnosed with NF remains one of our goals.