This year in honor of rare disease day Shaping Foundations held a virtual rare disease event called Being Rare in the Pandemic on 02/28/2021 from 10:30 AM to 12:00 PM EST.
This event aimed to introduce Shaping Foundations and their partners, while providing a perspective on patients’ lives during the COVID-19 pandemic.
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.
There were five guest speakers featured at the event, two of which were partners introducing themselves, and three of which were speaking on their experiences of having a rare disease or working in the rare disease community during the COVID-19 pandemic.
In the introductory portion of the event, a brief presentation introducing Shaping Foundations was first showcased to provide the audience with some background on the host organization. Then, Dr. Shyamala Peesapati, a rare ambassador of Shaping Foundations, introduced her own inspiring mission and story as a rare disease advocate. Following that, Tabitha L. Frank, founder of Endosalpingiosis Foundation INC (click HERE for her official website), a partner organization of Shaping Foundations, gave a wonderful presentation on her own journey with endosalpingiosis.
Afterwards, the event focused on the COVID-19 pandemic's effects on a patient, advocate, and industry professional of the rare disease community.
Victoria Jackson (check out her advocacy Instagram @speak_endo_toronto) unfortunately had to undergo an important procedure during the event, and so she recorded a video of her presentation. Her story was heartbreaking and powerful, as she described how the pandemic affected her and her treatment as a rare disease patient with endosalpingiosis.
Christopher DeHaven inspired everyone with his sincerity and strong words, as he spoke about his journey with spinocerebellar ataxia type 14. He is also the founder of Rare Disease Warriors, an amazing and welcoming Facebook Group for the rare disease community (click HERE to check out Rare Disease Warriors of Facebook).
Dr. Latika Hickey is an industry-professional from Rocket Pharmaceuticals (click HERE to check out Rocket Pharma's website), a prominent gene therapy company with several ongoing clinical trials for therapies for rare diseases. Her unique perspective gave the audience an insight into how she has directly witnessed the rare disease community be impacted by COVID-19.
Overall, all of the speakers were absolutely incredible and Shaping Foundations would like to thank them for their strength in sharing their stories! Their sincerity and passion for the rare disease community was felt by all, and we truly hope that our event was able to inspire or impact everyone in some way.
We hope that we were able to make rare disease day meaningful for everyone, and we would also like to thank the audience for taking the time and caring enough to join our event.
The Shaping Foundations team would like to wish everyone a wonderful Rare Disease Day 2021, and we hope to continue our efforts in raising awareness, fundraising, and advocating for the rare disease community!