What are the responsibilities and job description for the Volunteer Board Positions at Rare Disease Student-Led Non-Profit position at Rare Disease Youth Association?
Company Description
We are a 501(c)(3) fiscally sponsored nonprofit dedicated to improving the lives of people with rare diseases by spreading awareness, uplifting those affected, and encouraging or conducting rare disease research. Our organization operates globally with a mission to educate the public, support patients, and advocate for rare disease research advancements. Guided by students, we embody a passionate and driven community committed to making a meaningful impact. For more information, visit Rare Disease Youth Association.
Role Description
This is a remote, volunteer role for a Board Member at Rare Disease Youth Association. Board members are responsible for guiding the strategic direction of the organization, participating in monthly board meetings, overseeing organizational activities, and ensuring the execution of our mission. Members also engage in fundraising efforts, advocate for rare disease awareness, and support the development and implementation of programs and projects. The position demands dedication, strong leadership, and a collaborative spirit.
Qualifications
- Strategic planning and organizational leadership skills
- Fundraising, advocacy, and outreach experience
- Strong communication and public speaking skills
- Experience in non-profit management or similar fields
- Commitment to the cause of rare disease awareness and research
- Ability to work independently and collaboratively in a remote setting
Available Positions Currently
Marketing/Social Media Management
- Develop outreach strategies
- Experience in Graphic Design
- Create marketing materials (newsletters, flyers, digital content)
- Build partnerships with advocacy groups, nonprofits, and media platforms
Event Coordinator
- Coordinate webinars, events, campaigns
- Experience in event planning, project management, and nonprofit work
- Strong organizational skills