To mark Rare Disease Day, the Rare Disease Task Force are hosting a webinar on Monday, March 1st from 7pm- 8.30pm

The webinar will include:

• Presentations from two rare disease patient groups: Sickle Cell and Thalassaemia Ireland and 22Q11 Ireland
• The potential of gene editing for those with rare diseases: Guest speaker Professor Jane Farrar; Research Professor in Genetics, TCD
• About rare disease day: Rare Disease Ireland
• An update on progress and challenges related to rare disease policy, including a focus on COVID-19.

The webinar is free to attend, but registration is essential. Click below to register to attend.

The Rare Disease Taskforce brings together patient groups linked with

• Health Research Charities Ireland www.hrci.ie
• The Irish Platform for Patient Organisations, Science and Industry www.ipposi.ie
• Rare Disease Ireland www.rdi.ie

Click here to register to attend the webinar.

More information on speakers will be forwarded following registration

Technical support for this webinar is provided by Cystic Fibrosis Ireland