Utah Rare

Join us! Rare Disease Day 2017 in Salt Lake City UT #utahrare 2 day event-please visit r site for more info #RDD2017 #1in10

[Utah Rare @utahrare]

This survey will close on October 26th! Please take a couple minutes and fill out- would love your input! Thanks! https://t.co/lStVn0ms8T

[Utah Rare @utahrare]

ANNOUNCEMENT: Utah is one of the five new clinical sites for the Undiagnosed Diseases Network - UDN!

"The University of Utah, Salt Lake City, Principal Investigator: Lorenzo Botto, M.D."

“We... https://t.co/F9YXM22WTS

[Utah Rare @utahrare]

Have to share! https://t.co/5SNVdSnbpk

[Utah Rare @utahrare]

Dear Utah Rare Family and Friends,

Four years ago we gathered together as parents, patients, advocates and rare disease community leaders to find a way to bring awareness to rare disease families here in Utah. Each... https://t.co/TDxv9L5rQ8

[Utah Rare @utahrare]

Read and share! It could save a life ❤️ Thanks Kelsey Bobka for sharing your story and carrying on your son’s legacy by spreading awareness and advocating for more families. https://t.co/JD70OEZQXp

[Utah Rare @utahrare]

Hey friends, quick question. Have you been diagnosed through whole genome sequencing (different than exome sequencing)? If so, I would love to chat with you about a potential opportunity to share your voice. DM me here!

[Utah Rare @utahrare]

If you are close to Provo Utah this is one of my daughters most favorite events! Adapted versions of track and field for children with medical conditions and their siblings! More details below.... https://t.co/RKmEWsD3uI

[Utah Rare @utahrare]

https://t.co/Gp7IFkmLjU

[Utah Rare @utahrare]

Are you a young adult (ages 15-35) with a rare disease or chronic condition?

Our incredible colleague Seth Rotberg has created a survey for young adults impacted by a rare disease or chronic condition. The goal of the survey is to... https://t.co/CQmi3d53la

[Utah Rare @utahrare]

Looking forward to seeing all of our Utah Rare families and so many more from across the country this Saturday. It's going to be an incredible event! https://t.co/J4GCxnQyhl

[Utah Rare @utahrare]

https://t.co/jNbEa0vZZj

[Utah Rare @utahrare]

Inspirational! https://t.co/F15aWDJCLk

[Utah Rare @utahrare]

Join the Epilepsy Association of Utah for a fun filled day at Lagoon! Did you know there was an organization like this?? They have been supporting our community and patient for years and this annual event is so much... https://t.co/5CTm4f92bU

[Utah Rare @utahrare]

https://t.co/APqGcx1Z1x https://t.co/APqGcx1Z1x

[Utah Rare @utahrare]

Utah is getting on board with the all access playgrounds now which city wants to add an all access water park!!😎 https://t.co/sznfrN8x5H

[Utah Rare @utahrare]

Tunes For Tosh this weekend! Come support Tosh and his families efforts to raise funds for the U of U penelope (Undiagnosed Disease Program) 5k & 1 Mile fun run! Link for tickets... https://t.co/v7VqiKbXeZ

[Utah Rare @utahrare]

Thinking of all of those who are undiagnosed today on Undiagnosed Day ❤️ https://t.co/Gg7AVT25h7

[Utah Rare @utahrare]

Who has felt this way? https://t.co/CV3cGAfCJk

[Utah Rare @utahrare]

What an honor to be there to congratulate Dr. Lorenzo Davide Botto M.D. and Representative Steve Eliason at the finish line of the #SaltLakeCityMarathon this morning! Thank you University of Utah Health and Primary... https://t.co/SwolXgWBkn

[Utah Rare @utahrare]

"These are conditions that tend to evolve over time and if you don’t have a solid understanding of what’s going on, then that is a question that really troubles families,” said Botto. “The first... https://t.co/5UC03yJq0C