Joined October 2009
- Tweets 663
- Following 378
- Followers 108
- Likes 2,024
25 Photos and videos
22 Oct 2024
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…
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2 Mar 2024
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
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5 Feb 2024
Reposting because who, that was coming of age when this song was released, doesn't love Tracy Chapman?
5 Feb 2024
Tracy Chapman, who has not performed in public in years, performs "Fast Car" with Luke Combs at the #Grammys:
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30 Nov 2023
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…
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26 Oct 2023
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…
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Michele Herndon , @STomlinson44206 , and @RareMomMN did a great job at @GlobalGenes Rare Disease Summit today! #weekinrare @UDNconnect @UDNForg
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13 Sep 2023
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
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12 Aug 2023
Come join me @GlobalGenes Rare Advocacy Summit September 19-21!
#GGSummit23 #CareAboutRare globalgenes.org/event/rare-a…
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19 Apr 2023
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…
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5 Apr 2023
Too good to not retweet.
1/Putting this on record so that when we finally start talking about this seriously in 2032 or so, it will have been said:
The only way to halt or reverse America’s collapse is to institute national service as a norm.
Here’s why.
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7 Mar 2023
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…
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Sarah retweeted
28 Feb 2023
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
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Sarah retweeted
28 Feb 2023
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)
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1 Mar 2023
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.
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25 Feb 2023
A new consortium examining ways around barriers to treatment for ultra rare diseases. @UDNconnect
@UDN_PEER
gosh.nhs.uk/news/euro-group-…
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15 Feb 2023
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.
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31 Jan 2023
My current and previous @UDN_PEER co-chairs @stephp66 and @Meghan_Halley. Hardworking and brilliant!
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31 Jan 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
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