Are you living with a rare disease? Do you know someone living with a rare disease? Do you work in an environment where you encounter people living with rare diseases?
It is an exciting time for people living with rare diseases and their families (PLWRD) in Ireland. A new National Rare Disease Strategy was launched by the Health Minister at the end of August ) and comes with secured funding of up to €8m to initiate implementation. Development of this strategy has the lived experience of PLWRD at its heart. PLWRD will continue to be involved through implementation working groups and oversight groups.
Rare Diseases Ireland (RDI) is the national alliance for voluntary patient-led groups representing the estimated 300,000 people affected by or at risk of developing genetic or other rare diseases in Ireland. RDI works to advocate for the rare disease community (patients, family members and care givers), empower people living with rare disease (PLWRD) to advocate on their own behalf and engage PLWRD to provide input and become decision-makers in the development of health and social care policies and guidelines in Ireland.
Rare Diseases Ireland (RDI) is seeking up to 3 new board members to build and complement the existing board membership. In particular we are seeking Trustees with a background in communications, public affairs, fundraising and advocacy.
RDI is particularly interested in individuals diagnosed with a rare disease or individuals with family member(s) with a rare disease or care givers of PLWRD or representatives of a rare disease patient organisation. If you have experience in this area and want to play a role in RDI we're keen to hear from you.
Trustee
RDI is seeking to recruit trustees with knowledge and experience of rare diseases.
The Role
The role will include
Providing input to the strategic direction of RDI and contributing to strategy formulation, development and implementation.
Formation and implementation of policies and procedures to ensure the organisation is compliant with applicable legal requirements and pertaining to best practice.
Contribute to risk management in the organisation.
Skills & Qualities
An appreciation and knowledge of the voluntary & not-for-profit sector.
At least 3 years' experience operating at a senior level.
An understanding of and commitment to our mission and values.
Commitment to the highest levels of corporate governance.
Board Meetings
There will be a minimum of 4 board meetings per annum in addition to committee meetings. Meetings are held in Dublin and online.