The Northern Ireland Rare Disease Partnership (NIRDP) are thrilled to introduce their newly devised education and upskilling programme, “Understanding Rare”. This initiative is designed to foster a deeper understanding and empathy towards the unique needs of the 1 in 17/110K individuals (many of which are children) living with rare diseases or conditions in Northern Ireland, and many of whom experience acute mental health/financial/work/housing or isolation needs alongside carers or family members who are also experiencing these challenges. Some of these “Rare Stories” can be found here

NIRDP understand that mental health providers and Helplines NI (of which we are also a member) play a pivotal role in offering support and guidance to these individuals. Therefore, we have crafted a free 1.5-hour remote learning Continuing Professional Development (CPD) session that aims to equip mental health or helpline and support staff with the necessary knowledge and skills to address their needs more effectively.

Through this short programme, participants will be better prepared to:

• Understand the complex needs of those with rare diseases in our community.
• Empathise with their unique challenges and experiences through the sharing of Rare Stories
• Signpost more successfully to organisations like the NIRDP or other rare condition organisations, facilitating a network of comprehensive support.

NIRDP are pleased to inform you that this initiative is generously funded by the Community Foundation/DOH in Northern Ireland, a testament to the significance and potential impact of this programme. We kindly then encourage you to share this invaluable opportunity with your staff, colleagues, and those in your organisation responsible for supporting CPD initiatives. For further information or to express your interest, please do not hesitate to contact us directly or share this email with colleagues within or beyond your own organisation that may find this matter of interest, especially in training or HR departments.