The RARE Foundation Alliance holds two types of networking events: RARE Leader Meetups and RARE Lunch & Learn.

RARE Leader Meetups seek to connect all RARE Foundation Alliance members and strengthen unique bonds that connect the global rare disease community. These events will focus on educating and empowering Foundation Alliance members, with an emphasis on capacity building education.  Meetups will feature expert panelists and opportunities for members to exchange ideas with one another.

RARE Lunch & Learn is a new benefit introduced to Foundation Alliance members this year that will focus on relevant topics identified by feedback from our current members. Lunch & Learns are an additional opportunity to provide support and education to our members.  Sample topics include research poster presentations and how to expand your organization from volunteers to paid staff.

You can sign up to participate in all of these events, or just choose a few topics you’re interested in. If you have any ideas or suggestions of topics to focus on during these meetups, please feel free to forward your ideas to [email protected]

Thank you to all of our Corporate Alliance members for your support of these events.

Not a RARE Foundation Alliance Member? You can learn more and sign up your organization for free today. 

Upcoming RARE Foundation Alliance Events  

RARE Leader Lunch & Learn: Using Social Media For Rare Disease Awareness and Fundraising

Tuesday, August 3 from 12 pm – 1 pm ET 

Register here. After registering, you will receive a confirmation email containing information about joining the meeting.

Speaker: Shoshana Fishbein | Global Genes

Shoshana Fishbein

Shoshana Fishbein is Global Genes’ Senior Content Marketing Coordinator. She is passionate about using social media to raise awareness about rare diseases. Shoshana’s personal experience of being a rare disease sibling led her to use social media as a tool to connect the rare disease community. She received her Masters in Public Health from the George Washington University’s Milken Institute School of Public Health. 





Save The Date: Future Foundation Alliance Events

August 17th: RARE Leader Meetup

Past Events

July 13: RARE Leader Meetup: Growing Your Organization

June 30: RARE Lunch & Learn: Capacity Building – Moving from volunteers to paid staff