Get Involved – Social Media

Why Join the Social Media Team?

If you're passionate about storytelling, social media, and raising awareness for rare diseases, the Social Media Team is the perfect place for you! By joining our team, you’ll play a critical role in amplifying the voices of the rare disease community and advocating for vital policy changes.

1. Amplify the Voices of Rare Disease Families
   
   • Use your skills to raise awareness of rare diseases, share patient stories, and promote advocacy efforts that directly impact families.
   • Help put a spotlight on the challenges, needs, and successes of the rare disease community, giving them the platform they deserve.
2. Help Shape Policy and Drive Change
   
   • Social media is a powerful tool for influencing policy. By sharing relevant content, you can help push forward important legislative actions, such as the Rare Disease Advisory Council (RDAC) and other key bills.
   • Advocate for healthcare reform, access to genetic counseling, and improved care for rare disease patients on a global stage.
3. Engage with a Community of Passionate Advocates
   
   • Connect with rare disease families, healthcare professionals, and advocates across social media platforms.
   • Create a supportive environment for individuals and families by sharing resources, offering tips, and spreading hope through online engagement.
4. Build Your Skills and Grow Professionally
   
   • Enhance your experience in digital marketing, content creation, graphic design, and community management.
   • Be part of a collaborative, creative team that is focused on making an impact in the healthcare and advocacy space.
5. Be a Part of Something Bigger
   
   • As a member of the Social Media Team, you’ll be part of an initiative that’s shaping the future for rare disease patients and families.
   • Your contributions will help raise awareness, foster collaboration, and drive progress for people who often feel unheard and unseen.