So excited to co-chair, again, this amazing group of movers and shakers for ultra rare and undiagnosed diseases.

My current and previous UDN PEER co-chairs @stephp66 and Meghan Halley. Hardworking and brilliant!

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.

A new consortium examining ways around barriers to treatment for ultra rare diseases. UDN UDN PEER gosh.nhs.uk/news/euro-grou…

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. Coalition to Cure CHD2 #rarediseaseday #chaserr

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.

Today! It's today! Register now. Come listen!

#Kindness #Humanity

Woo-hoo Kara Anderson . Huge congrats!

Too good to not retweet.

Huge kudos to Meghan Halley and countless others for their dedication to the launch of this organization. The power of patient voices is incredible. Undiagnosed Diseases Network Foundation (UDNF) UDN PEER UDN einnews.com/pr_news/628418…

Come join me Global Genes Rare Advocacy Summit September 19-21! #GGSummit23 #CareAboutRare globalgenes.org/event/rare-adv…

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-advocates… EveryLife Foundation UDN PEER Undiagnosed Diseases Network Foundation (UDNF)

Michele Herndon , Stephanie Tomlinson , and Sarah did a great job at Global Genes Rare Disease Summit today! #weekinrare UDN Undiagnosed Diseases Network Foundation (UDNF)

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 Undiagnosed Diseases Network Foundation (UDNF) UDN linkedin.com/feed/update/ur…

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…

Reposting because who, that was coming of age when this song was released, doesn't love Tracy Chapman?

It was a great day!

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/sarahma…