IDefine attends Ultragenyx Rare Entrepreneur Bootcamp

Ultragenyx, a biopharmaceutical company involved in the development of novel products for treatment of rare genetic diseases, has been advising rare disease non-profits on an ad hoc basis for years.

However, in 2017, Ultragenyx decided to develop a more formal curriculum on the rare drug development process, and the “Rare Bootcamp” was born. Since then, more than 65 patient and family organizations have participated in the Bootcamp event series.

To ensure that the bootcamps are personal and impactful, only a small number of organizations that have typically already started their drug development journey are invited to attend.

IDefine was invited and represented at the two-and-a-half-day event in Novato, Calif., by Geoff Rhyne, CEO, and Eric Scheeff, chief scientific officer (CSO).

“It's an honor to be invited because it means that IDefine is viewed as ready enough as an organization to really hear this message,” said Scheeff. “It was exciting to get the invitation and a golden opportunity that we couldn't miss. My expectations were high, and they were massively exceeded.”


Southern Roots supports IDefine

The inaugural Southern Roots Reunion, held on April 30th in Travelers Rest, SC, laid the foundation for a great annual event year over year.  

The event featured chefs from all over the country dishing out delicious brisket, ribs, NY strips and more with varying side dishes.  Gyth Rigdon and several other bands kept the event buzzing and feet shuffling!

Perhaps most importantly, 13 families impacted by Kleefstra Syndrome were able to meet, connect, and develop stronger relationships.  The event was enjoyed by everyone that came, and collectively, over $40,000 was raised!  We are already starting to plan next year...after all, it is a reunion!


IDefine the Future Podcast

IDefine has launched a new podcast, IDefine the Future.  So far, we have produced two episodes where host, Geoff Rhyne, gives updates on what is taking place in the world of Kleefstra Syndrome.

The goal for this ongoing series is to continue to provide opportunities for our community to be aware, be involved, and to take action to help move our efforts forward.  

The podcast can be found on Spotify, Apple Podcasts, and via the IDefine YouTube channel.

Feel free to forward topics you are interested in hearing about to 



Quick Clips on Kleefstra

  • Meet and Greet: Join Teens + Adults with KS in a virtual "Meet and Greet" chat May 29th at 12:00pm est.  REGISTER HERE! 

  • KleefSTAR: Are you interested in seeing your loved one recognized for how amazing he/she is?  Fill out this Google Form!

  • The Kleefstra Worldwide Map: Where in the world are we?  Participate in this worldwide effort to build an accurate census for our community!  

  • IEP Webinar: Did you miss the "It Takes A Village" webinar on IEP's?  If so, find it HERE!


IDefine, Inc
925B PEACHTREE STREET NE BOX 2173  | Atlanta, Georgia 30309

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