Cup O’Collaboration is a sub-group of RAiN, comprising adults living with rare diseases, parents/caregivers of individuals living with rare diseases and rare disease advocates. Ahead of the festive season, some of our members have some important messages to share.
Kathy Jameson’s drive to advocate for rare diseases stems from her lived experience caring for her daughter who lives with 22q deletion syndrome. Kathy shares some of her lived experience, the challenges that she and her daughter face, and the need to raise awareness.
Bernadette Sheehan Gilroy shares her personal commitment to research and advocacy, with a specific focus on PKU. Bernadette discusses the importance of developing leaders, not followers, as an emerging leader in the PKU field.
Donal O’Shea shares his personal experience being diagnosed with and living with a rare disease. Donal is an inspiring advocate in the disability sector, with a specific focus on diversity and inclusion.
Triona Seery speaks about her experience living with a rare disease, and some of the challenges that she faces on a day-to-day basis. Triona is an integral member of the Cup O’Collaboration group and always brings clever, innovative ideas to the group. Exciting announcement coming in 2025 led out by Triona…
