Role Overview:

The Vice-President (VP) of the Australian NPC Disease Foundation (ANPDF) plays a pivotal role in supporting the organisation's leadership team. Acting as the second-in-command, the VP works closely with the President and the board to advance the foundation’s mission of improving the lives of individuals and families affected by Niemann-Pick Disease, particularly Type C.

Key Duties:

• Support Leadership: Assist the President with strategic planning, decision-making, and advocacy efforts.
• Act as a Proxy: Chair meetings or represent the President when they are unavailable.
• Take on Projects: Lead or contribute to specific initiatives or sub-committees, such as event planning, policy development, or advocacy campaigns.
• Board Engagement: Actively participate in monthly online board meetings and contribute to discussions.
• Stakeholder Collaboration: Build and maintain relationships with key stakeholders, including families, medical professionals, and funding bodies.

Skills and Experience Needed:

• Leadership Experience: Prior experience in a leadership or board role is preferred.
• Strong Communication Skills: Ability to liaise with a variety of stakeholders and convey key messages effectively.
• Organisational Skills: Capable of managing multiple responsibilities and prioritising tasks.
• Advocacy or Non-Profit Background: Experience in advocacy, community work, or non-profit organisations is highly regarded.
• Teamwork and Initiative: Demonstrated ability to collaborate and take initiative on projects.

About ANPDF:

The Australian NPC Disease Foundation (ANPDF) is a national organisation dedicated to supporting individuals and families impacted by Niemann-Pick Disease. Our efforts focus on raising awareness, advocating for access to treatments, and fostering a supportive community through initiatives like the National Care and Guidelines project and Annual Conference.

Benefits of Volunteering with ANPDF:

• Make an Impact: Directly contribute to improving the lives of families affected by a rare disease.
• Professional Growth: Gain experience in governance, advocacy, and community engagement.
• Networking Opportunities: Collaborate with passionate individuals, healthcare professionals, and advocacy leaders.
• Flexible Commitment: Attend monthly Zoom meetings and contribute at your own pace.
• Be Part of a Purpose-Driven Team: Join a compassionate group dedicated to making a difference.

The Impact of Your Role:

Your leadership as Vice-President will amplify our ability to advocate for treatment options, raise awareness, and support affected families. Together, we can drive meaningful change in the rare disease community, bringing hope to those impacted by NPC.

How to Apply:

To stand for election to the ANPDF Committee, nominees must submit a completed nomination form with a proposer and seconder available at npcd.org.au/agm.

New to ANPDF? If you don’t yet know any members to support your nomination, apply here or visit npcd.org.au/agm to submit your Expression of Interest (EOI).

1. Submit an Expression of Interest (EOI) to the General Manager.
2. We’ll help facilitate introductions with current members.
3. Once two members agree to support your nomination, your form can be finalised and included in the AGM election process.

Join us in managing ANPDF's finances and enabling impactful change for families living with NPC!