Rare Disease Forum 2022-Partnering to Advance the Rare Disease Agenda

Health Research Charities Ireland along with Rare Disease Ireland, Cystic Fibrosis Ireland, IPPOSI and the Northern Ireland Rare Disease Partnership have come together to form The Rare Disease Forum. This is a public and patient involvement initiative for Ireland, North and South, which calls for coordinated action to improve the health and social care needs of those living with a rare disease.

The Forum has evolved from the Irish Rare Disease Taskforce, and its aim is to broaden the conversation further and host events to tackle the big issues around rare diseases.

The November event was titled Partnering to Advance the Rare Disease Agenda.

It featured a panel of speakers with perspectives from patients, policymakers, & health researchers and took place online on Monday 28th November at 6.30pm. Registration was essential.

Find the full agenda here

On behalf of the Rare Disease Forum Steering Group, this third virtual event of 2022 was led by IPPOSI and was open to all people living with rare diseases, carers, and patient organisations, as well as key stakeholders such as health and social care professionals, researchers, industry representatives, funders, policymakers, politicians and all with an interest in rare diseases. Thanks for joining us.