Minnesota Rare Disease Advisory Council

09/15/2026

Check out this upcoming, free event made possible with support from PWS-MN! On October 15, the Diverse Voices Showcase will share short animated films made by people with disabilities. Check out the four short films in this year's showcase and meet the artists and their care teams. This is going to be a fun event!

The showcase is free, but you must register in advance at:

Celebrate the creativity of Diverse Voices participants by viewing their four animated films! Meet both the artists and the support team!

09/08/2026

Our friends at the Children's Tumor Foundation are hosting the NF Walk on September 19 in Bloomington. Check out the NF Walk webpage if you want to support or participate in this year's event!

The NF Walk brings the community together to benefit the Children’s Tumor Foundation and its mission to end NF, a group of genetic conditions that...

07/24/2026

Join our friends from Children's, The Children's Tumor Foundation, UMN Genetics, and Mayo Clinic on August 7 for the 2026 Neurofibromatosis Symposium in Minneapolis! Care providers, patients, and families are welcome to learn more about features and management of neurofibromatosis type 1 and the Schwannomatoses, including NF2. Our executive director, Erica Barnes, is presenting!

Registration closes July 29:

If you would like to attend the 2026 Minnesota Neurofibromatosis Symposium IN-PERSON, please register for this option. Once you select your option, we are not able to adjust or change to the virtual option.

04/29/2026

Looking forward to our upcoming watch party for the Sanford Great Plains Rare Disease Summit! Register today to join us!
https://forms.microsoft.com/g/nHG5TuLSpt

04/20/2026

Gillette Children’s is hosting the 4th Annual Gillette Children’s Pediatric to Adult Health Care Transition Summit will take place Monday, May 18, 2026, from 9:00 a.m. - 4:00 p.m. at the Wilder Foundation. This hybrid Summit has AMA PRA Category 1 CreditsTM for CME. Credit amounts are to be determined. Register to attend in-person by May 4th! Register to attend virtually by May 11th! Find out more at https://2026gillettetransitionsummit.eventbrite.com/