Are you interested in rare diseases?
Join us on Monday 28 November from 6:30 to 8:00 p.m. for a Rare Disease Forum Event 'Partnering to Advance the Rare Disease Agenda'
The Rare Disease Forum 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 founding organisations and members of the Rare Disease Forum Steering Group areRare Diseases Ireland; the Northern Ireland Rare Disease Partnership; Health Research Charities Ireland; the Irish Platform for Patient Organisations, Science and Industry; and Cystic Fibrosis Ireland. 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.
On behalf of the Rare Disease Forum Steering Group, this third virtual event of 2022 is being led by IPPOSI and is 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.
The event will feature a panel of speakers with perspectives from patients and patient organisations, policymakers, and health researchers. A draft agenda is being finalised and will be sent in due course.
If you are interested in attending the Rare Disease Forum Event, please register here or at the link below:
https://us06web.zoom.us/meeting/register/tZYrdu2oqjsiHdKq1N9mIndzSFTTezgQ1bi8
Visit draft agenda: