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Writer's pictureShaping Foundations

Rare Disease Event: Young & Rare


This year in honor of rare disease day Shaping Foundations held a virtual rare disease event called Young and Rare: Rare Diseases from a Youth Perspective on 02/21/2022 from 3:00 to 4:00 PM EST.


This event aimed to share the unique perspective and experiences of people who were diagnosed or affected by rare diseases from a very young age.


If you missed the event, no worries! The event was recorded and has been posted on the Shaping Foundations YouTube channel.





Click HERE to watch the full recording of the event or check out the video below.



We also give special thanks to our three guest speakers, and we highly encourage you to check out their social media platforms, as they all have such amazing stories and content. Here is the speakers' information:

  • Katie Callaghan: founder of Cards for Bravery (@cardsforbravery on Instagram). You can find her personal account on Instagram @katieds_

  • Esha Brahmbhatt: high school senior and our very own Social Media Coordinator. You can find her Instagram @eshawithane_

  • Alisha (Ali) Kiyoko: GIST Cancer fighter & advocate, daily vlogger, streamer, and content creator. You can find her on Instagram @owlsaur and on YouTube as Owlsaur.


As mentioned in our event, we are also hosting a Rare Disease Day Card Exchange! Submit a card to receive one of Rare Disease Day (2/28/22). This is a precursor event for our pen pal program, which will be launching later in the year. If you are interested in the pen pal program, indicate your interest on the Google Form when you submit a card.


Submit a card to our Rare Disease Day Card Exchange! You can submit one to this form: https://forms.gle/E9v6kNVr8i5KbtLG6

Here is some other important information from our event:

Thank you again for attending our event! Please feel free to reach out to us through our email (shapingfoundations@gmail.com) or through our website with any inquiries or concerns.

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