@RareMomMN
Account based inUnited States
About this account
- Account based in
- United States
- Connected via
- Web
Account-level information from X, not a live location or the device used for a specific post.
Interested in GDF11. Integrity and curiosity are core to my being.
Joined October 2009
- Tweets663
- Following373
- Followers107
- Likes2K
My story is as a mom of someone with an undiagnosed condition:
Join me in raising money for Undiagnosed Diseases Network Foundation! via @givebutter givebutter.com/uCQQC9/sarahm…
It was a great day!
We have the dream team (@Phoebsmarshy , @RareMomMN, and @CtownPaul) at the UDNF table at NIH #RareDiseaseDay2024 ! If you are also at this event please stop by
Reposting because who, that was coming of age when this song was released, doesn't love Tracy Chapman?
Tracy Chapman, who has not performed in public in years, performs "Fast Car" with Luke Combs at the #Grammys:
If you are unaware of three FDA's Proposed policy change for Laboratory Developed Tests, educate yourself. It has HUGE negative implications for rare disease. m.youtube.com/watch?v=EHpsjq…
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/urn…
Sarah retweeted
Michele Herndon , @STomlinson44206 , and @RareMomMN did a great job at @GlobalGenes Rare Disease Summit today! #weekinrare @UDNconnect @UDNForg
I am thrilled to be a part of this event! If you are interested in rare disease and health policy, you won't want to miss this
!everylifefoundation.org/rare…
@EveryLifeOrg @UDN_PEER @UDNForg
Come join me @GlobalGenes Rare Advocacy Summit September 19-21!
#GGSummit23 #CareAboutRare globalgenes.org/event/rare-a…
Huge kudos to @Meghan_Halley and countless others for their dedication to the launch of this organization. The power of patient voices is incredible. @UDNForg @UDN_PEER @UDNconnect
einnews.com/pr_news/62841816…
Today! It's today! Register now. Come listen!
Our next lecture is 🚨TOMORROW!🚨1-2pm EST, titled : “Undiagnosed Diseases Network Foundation (@UDNForg): Centering Patients in Diagnosis, Research, and Care” with the UDNF board of directors.
There is still time to register ! harvard.zoom.us/webinar/regi…
Sarah retweeted
It's Rare Disease Day! Emma is one of two patients in the world with Chaserr. Every person deserves the right to a diagnosis and eventually a cure - this requires more whole genome sequencing, more science, patience and some faith. @curechd2 #rarediseaseday #chaserr
Sarah retweeted
70 years ago today, two scientists walked into a pub and announced they had just “found the secret of life,” referring to DNA’s double helix (thanks to Rosalind Franklin). But this anecdote doesn’t capture how this moment was a paradigm shift in molecular biology. (Thread)
Rare disease research is important.
If you can't find compassion for the 1 in 7 people you know with a rare disease, know that understanding the basic molecular biology of RD lends understanding to common diseases like cancer, Parkinson and Alzheimer's the likely impact you.
A new consortium examining ways around barriers to treatment for ultra rare diseases. @UDNconnect
@UDN_PEER
gosh.nhs.uk/news/euro-group-…
The MSU mass shooting marked the 67th mass shooting – with four or more shot, not including a gunman – so far in 2023,
67. This is the 46th day of 2023.
So excited to co-chair, again, this amazing group of movers and shakers for ultra rare and undiagnosed diseases.
We just finished our @UDNconnect PEER in person meeting at @thelinehotel in Washington D.C.! Lots of exciting things are in store for 2023! #raredisease #wearetheUDN
