RARE DISEASE VIRTUAL SUPPORT HUB
Community Activator, Rare Disease Virtual Support Hub
Edel is specifically seeking to identifying what gaps exist, particularly in relation to supporting our mental health as we move through our rare disease journey.
“As a charity professional with over fifteen years of experience in the third sector I am delighted to join the Northern Ireland Rare Disease Partnership as Community Activator.
Most recently I worked for the Royal Osteoporosis Society as the NI Development Manager for five years – representing this charity at all levels in NI including the Political and Health Care arenas lobbying for better osteoporosis services, plus in devising and delivering programmes of education to raise awareness of this condition.
Prior to this I have worked in charity marketing, volunteer recruitment & management, fundraising, corporate sponsorship & as a charity ambassador building relationships and influencing stakeholders & organisations and I am thrilled now to be able to use my skills and experience to develop NIRDP’s on the ground support in NI through the Virtual Support Hub we are #Stronger Together.
Away from work life for me is all about spending time with my family. I also love to get away from it all in our touring caravan in which we have travelled around Ireland, the UK, and into Europe.”
Contact Edel at email@example.com
or on telephone 0770 447 6930
Community Navigator, Rare Disease Virtual Support Hub
Caroline is the first point of contact for anyone with a rare disease query or comment. She will help you to navigate through the maze of support organisations that exist and help direct you to the most appropriate ones.
“After studying Community Education and Development I naturally began working in the third sector, and now have over 8-years’ experience working directly with people, co-ordinating & facilitating Support Groups, Carers Sessions and WellBeing Projects all the while networking with partner organisations. Additionally, I have a wealth of knowledge and experience providing advice information and signposting.
My passion is working with people, what I continually find compelling, motivating and moving are people. I am delighted to being a part of the NIRDP team and make a difference to the NI Rare Disease Community.
Aside from work I enjoy being with my friends and family. I like to bake, and I try to keep active with Pilates and Yoga. “
Contact Caroline at firstname.lastname@example.org
or on telephone 0770 447 6929