RDYA Chapter Handbook

Welcome Message

We’re so excited that you’re joining us in building a global youth movement for rare disease awareness, advocacy, and change!

By starting an RDYA Chapter at your school, you’re helping us give a voice to the millions of individuals and families affected by rare diseases worldwide.

We can’t wait to see how you will bring RDYA’s mission to life in your community!

About RDYA

Mission: The Rare Disease Youth Association (RDYA) empowers young people to raise awareness, advance research, and support families affected by rare diseases. We strive to amplify rare voices, provide resources and support, and build a global community united for change!

Impact So Far: 

  • 27,500+ people reached
  • 220+ people directly impacted

Why Start a Chapter with Us?

Starting a chapter means becoming part of a global movement! As Chapter Leader, you’ll:

  • Lead with Purpose → develop leadership, communication, and advocacy skills while strengthening your resume/college applications

  • Volunteer Hours: Every meeting, event, and social media post earns volunteer hours.

  • Impact: Drive awareness and change at the intersection of medicine, health policy, and advocacy in your community

Chapter Requirements

Eligibility: 

  • Open to middle school, high school, and college students internationally
  • Faculty/staff advisor recommended for middle school and high school
  • Club must recruit at least 5 active members (not including the leadership team)
  • Leadership Team of 6 officers (more information on the next slide)

To remain an active RDYA Chapter, you must..

ACTIVITIES:

  • Have a minimum of 2 awareness events and 1 fundraising event per school year.
  • Hold regular meetings (weekly or biweekly), plan events, and learning about rare diseases.

COMMUNICATION:

  • Submit end-of-semester activity reports and stay in contact with RDYA

Leadership Structure

President

  • Leads the chapter and sets the vision for the year
  • Coordinates chapter activities and meetings
  • Main point of contact with RDYA
  • Ensures all members follow the Code of Conduct

Vice President

  • Assists the President in leadership duties
  • Steps in when the President is unavailable
  • Helps oversee projects and support other officers
  • Coordinates recruitment and ensures member engagement

Secretary

  • Takes meeting notes and maintains records
  • Keeps track of attendance, member contact information, and event documentation
  • Prepares and submits activity reports to RDYA

Event Organizer

  • Plans and executes chapter events (awareness days, guest speakers, campaigns, fundraisers)
  • Coordinates logistics (location, schedule, supplies)
  • Works with the President and Treasurer to ensure events align with chapter goals

Social Media Manager

  • Manages the chapter’s social media accounts
  • Promotes events and awareness campaigns online
  • Shares stories, photos, and updates with RDYA and the community

Treasurer

  • Manages chapter funds and keeps financial records
  • Tracks fundraising progress and ensures transparency
  • Works with the Event Organizer and the President to budget for events and initiatives

Code of Conduct

All RDYA Chapter members and leaders are expected to follow this Code of Conduct. The President ensures these standards are upheld within the chapter.

RESPECT & INCLUSIVITY

Treat all members, partners, and the rare disease community with kindness and respect. Value different perspectives and experiences! Create a welcoming environment where EVERYONE feels valued and safe.

PROFESSIONALISM

Represent RDYA positively in all events, meetings, online spaces, and communications.

RESPONSIBILITY & RELIABILITY

Be dependable. Follow through on commitments, attend meetings regularly, and meet deadlines. Communicate any concerns or challenges so the team can support you.

INTEGRITY & TRANSPARENCY

Act with honesty and fairness in all chapter activities. Be open and transparent in fundraising, leadership decisions, and communication with RDYA.

Application Process

READ CHAPTER HANDBOOK

Understand RDYA’s mission, expectations, and requirements.

RECRUIT & GATHER INTEREST

Gather and recruit interested members at your school (and a faculty advisor if required!)

FILL OUT RDYA CHAPTER FORM

Submit your team’s information to get your chapter started!

Link: Rare Disease Youth Association Chapter Application 

ACCESS THE CHAPTER GUIDE

Get approved and receive resources with weekly meeting outlines, event ideas, and templates.

LAUNCH YOUR CHAPTER!

Start hosting weekly meetings and plan your first awareness event.

Thank You!

We are excited to see your chapters make an impact!

By starting a chapter with the Rare Disease Youth Association, you are helping to further our mission of supporting the rare disease community while joining a global youth movement that’s helping to shape the future of rare disease awareness.