Derry Mayor to meet NI Rare Disease partnership
Charity aims to build meaningful partnerships, amplify the voices of the rare disease community, and promote equal access to treatments, services, education, and care
The NI Rare Disease Partnership (NIRDP) is set to meet Mayor of Derry City and Strabane District Council Ruarí Mc Hugh as part of a major outreach initiative.
The meeting will take place on Wednesday, July 16, 2025.
The charity will visit all 11 local councils across the North to raise awareness about the complex challenges faced by individuals and families living with rare conditions.
Its aim is to “reinforce a commitment to collaboration and ensuring that no one living with a rare disease is left behind”.
A NIRDP spokesperson said: “With more than 110,000 people affected by rare diseases in Northern Ireland, we are calling on councils to prioritise inclusion and support in local strategies and planning.
“The campaign aims to build meaningful partnerships, amplify the voices of the rare disease community, and promote equal access to treatments, services, education, and care.
"At each meeting, the NIRDP team will share powerful lived experiences and practical insights. We will also be urging the mayoral offices to support awareness campaigns, consider rare disease needs in policy decisions, and explore opportunities for joint initiatives, funding streams, corporate partnerships, and improvements in inclusion and accessibility.”
NIRDP also highlights the “vital role” of families and carers, who often provide essential support yet face their own unique challenges.
“The campaign has been positively received, sparking constructive conversations and growing interest among local leaders, who acknowledge the urgent need to address the needs of those with rare conditions,” said the NIRDP spokesperson.