UDN PEER
@UDN_PEER
The UDN Participant Engagement and Empowerment Resource (PEER) group supports participants and family members enrolled in the Undiagnosed Diseases Network.
We are very excited to introduce the new non profit organization , @UDNForg . This org was created by patients and families of the UDN and this will help change the game for #raredisease . Give them a follow to keep track of what’s coming up!einnews.com/pr_news/628418…
Check out this article about @UDNconnect in @HarvardMagazine , featuring an inspiring patient story, along with the current state and future of rare disease research magazine.hms.harvard.edu/articles/solvi…
Today @ 12 ET, come listen to the personal story of Nikki 's daughter who passed away in 2020 of an undiagnosed disease & Dr. Oglesbee of @MayoClinic and Nicole Walley of @DukeU talk about the challenges in science towards finding a a diagnosis. Register : udnf.org/tell-me-more-w…
Paul Mazur (@CtownPaul , @UDNconnect) with Patricia Weltin, Beyond the Diagnosis portrait exhibit at the NIH #raredisease day event.
Day 2 of the UDN Steering Committee meeting is underway #undiagnosed #RareDisease
There are plenty of opportunities to plug in 🔌 for #RareDiseaseWeek2024! 🦓 @EveryLifeOrg @RareAdvocates @RareDiseases @US_FDA @NIH #RareDC2024 #RareDisease #RareDiseaseDay #RDDNIH #advocacy #policy #awareness #homocystinuria #HCU #HopeConnectsUs
PEER has a busy week planned in Washington DC for Rare Disease Week! Exciting things to come
Register now for our PEER book launch lecture series📖! Normal Broken: The Grief Companion for When It’s Time to Heal but You’re Not Sure You Want To by @KellyGC411 . January 26th 12-1 ET Click to register : harvard.zoom.us/webinar/regist…
UDN PEER invites you to attend Book Launch Lecture series with author, Kelly Cervantes, and moderator, Kim Bernardi, on Friday, January 26th from 12:00-1:00pm ET Register at bit.ly/NormalBrokenLa… All are welcome!
Please take a look at this inspiring patient story posted by @UDNForg . Thank you to the McGarvey Family for sharing your story and spreading awareness about #raredisease linkedin.com/posts/udnforg_…
@UDNForg has a vision and mission worthy of your donation towards both science and patient support. givebutter.com/lU2O0Z @UDNconnect @UDN_PEER
Today’s the day! There’s still time to register!!
UDN PEER invites you to attend a lecture with Katheryn Brauckmann & Alex Lowery on Friday, November 17th from 12:00-1:00pm ET Only ONE DAY left to register! Register here: harvard.zoom.us/webinar/regist… All are welcome! #raredisease #undiagnosed
UDN PEER invites you to attend a lecture with Katheryn Brauckmann & Alex Lowery on Friday, November 17th from 12:00-1:00pm ET Register here: harvard.zoom.us/webinar/regist… All are welcome! #raredisease #undiagnosed
If you are looking for a worthy cause to support, the UDNF has integrity and a mission that is driven by both people and science. Your donation matters to me. @UDN_PEER @UDNForg @UDNconnect linkedin.com/feed/update/ur…
UDN PEER invites you to attend a lecture with Katheryn Brauckmann & Alex Lowery on Friday, November 17th from 12:00-1:00pm ET Register here: harvard.zoom.us/webinar/regist… All are welcome! #raredisease #undiagnosed