The MS for Dwyfor Meirionnydd has hosted an event in the Senedd to raise awareness of rare diseases and the urgent need for greater support for those affected.

The event, organised by Mabon ap Gwynfor, brought together leading organisations in the field, including the Multiple System Atrophy Trust (MSA), Genetic Alliance UK, MSUK, and Cerebra, to highlight the challenges faced by patients and families living with rare and often misunderstood conditions.

Sian Edwards from Bala shared the deeply personal story of her father’s battle with Multiple System Atrophy, a rare and terminal neurological condition, speaking candidly about the lack of awareness and resources available to families like hers and calling on policymakers to take urgent action to improve access to specialist services, particularly through the Welsh language.

Speaking afterwards, Mr ap Gwynfor said: “Rare diseases may be individually uncommon, but collectively they affect thousands of people across Wales.

“Today’s event was a vital opportunity to listen to those with lived experience and to hear directly from organisations working tirelessly to support patients and drive research forward.

“I’m incredibly grateful to Sian for her bravery in sharing her story and for highlighting the need for faster, fairer diagnosis, for greater understanding, and for improved care and services - especially for Welsh speakers - because language is part of dignity and belonging, and no one should have to struggle to be understood when they’re at their most vulnerable.

“We must do more to ensure that people living with rare diseases - and their families - are not left to navigate complex systems alone.

“The current Welsh Government’s Rare Disease Action Plan runs until 2026 - but we can’t wait until the last minute to think about what comes next. With an election on the horizon next year, we must ensure that political timelines don’t slow down progress. Patients and families cannot afford to lose time - not when every day matters. This is about dignity, fairness, and ensuring everyone gets the care they need.”

Sian added: “Watching my dad suffer was devastating, we felt isolated and overwhelmed, not knowing where to turn for help. I don’t want any other family to go through what we did. That’s why I’m speaking out - to make sure people with rare diseases and their loved ones get the support, understanding, and care they deserve.

“There needs to be a system in place that recognises the unique challenges of rare diseases – not just for patients, but for carers and families too.

“We need better awareness among healthcare professionals, faster diagnoses, and emotional and financial support that doesn’t come too late.

“For my dad, receiving care in his first language - Welsh - was essential to his dignity and comfort.

“When someone is seriously ill, being able to communicate in the language of your heart matters. Welsh-speaking patients and families must be able to access services that respect and reflect their language and identity.”

Mr ap Gwynfor pledged to continue working with stakeholders and cross-party colleagues to ensure the voices of rare disease patients and their families are heard.