NORD Representative
About the Role
Position Overview
Nevus Outreach is seeking a dedicated volunteer to serve as our official representative to the
National Organization for Rare Disorders (NORD). In this role, you will act as a liaison
between Nevus Outreach and NORD, ensuring our community is engaged in national rare
disease advocacy, research initiatives, and policy discussions. This is a unique opportunity to
amplify the voice of individuals with congenital melanocytic nevi (CMN) and related conditions
within the broader rare disease space.
Commitment & Responsibilities
Represent Nevus Outreach at virtual NORD meetings throughout 2025.
Potentially attend in-person meetings and conferences beginning in 2026 and beyond.
Stay informed on NORD initiatives and relay relevant updates to the Nevus Outreach Board and staff.
Advocate for the needs of the CMN community within NORD’s initiatives, research efforts, and policy discussions.
Collaborate with other rare disease organizations to advance shared goals.
Provide quarterly reports or updates on key takeaways from NORD meetings.
Who You Are
The ideal candidate is passionate about patient advocacy, well-versed in Nevus Outreach’s
mission, and comfortable representing our organization in professional settings.
Preferred qualifications include:
Prior service on the Nevus Outreach Board of Directors or previous volunteer experience with Nevus Outreach.
Strong communication and collaboration skills.
A commitment to patient-centered advocacy and rare disease initiatives.
The ability to attend and actively participate in virtual meetings.
Benefits of Serving
Opportunity to shape national discussions on rare disease policy and research.
Gain valuable experience in non-profit representation and advocacy.
Expand professional networks within the rare disease community.
Help strengthen Nevus Outreach’s role as a leader in the rare disease space.
This is a volunteer position with an initial one-year commitment for 2025, with the potential to
continue into 2026 and beyond.
If you’re interested in representing Nevus Outreach within NORD, we encourage you to apply!
Time Commitment:
● Flexible, with an estimated 1-3 hours per month.