Washington University Rare Diseases Care (@washurarecare) 's Twitter Profile
Washington University Rare Diseases Care

@washurarecare

NORD Rare Disease Center of Excellence | We provide clinical diagnosis, care for those with rare diseases and are recognized as a leader in rare diseases.

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linkhttps://wus.tl/rarediseasecare calendar_today12-04-2023 15:47:24

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ICTS @ WashU in STL (@wuicts) 's Twitter Profile Photo

Register for Tips and Resources for Clear and Effective Presentations on September 18th 10-11:30am. Mychal Voorhees, Sr. Health Communication Specialist and Monica Sala-Rabanal, Science Communication Specialist, WashU Medicine Becker Library will present. Learn more> l8r.it/8UXW

Register for Tips and Resources for Clear and Effective Presentations on September 18th 10-11:30am.

Mychal Voorhees, Sr. Health Communication Specialist and Monica Sala-Rabanal, Science Communication Specialist, <a href="/BeckerLibrary/">WashU Medicine Becker Library</a> will present.

Learn more&gt; l8r.it/8UXW
ACMG (@theacmg) 's Twitter Profile Photo

September is #NewbornScreening Awareness Month. Follow ACMG throughout the month as we celebrate the lives saved by newborn screening and share the ways ACMG supports this important #publichealth program. #2025NBS #genetictesting

September is #NewbornScreening Awareness Month. Follow ACMG throughout the month as we celebrate the lives saved by newborn screening and share the ways ACMG supports this important #publichealth program. #2025NBS #genetictesting
CheckRare (@checkrare) 's Twitter Profile Photo

September is Histiocytosis Awareness Month! Histiocytosis is a rare hematologic disorder characterized by the overproduction of histiocytes, leading to granulomas in many areas of the body. In about half of the cases, genetic changes in the BRAF gene appear to be involved;

September is Histiocytosis Awareness Month!

Histiocytosis is a rare hematologic disorder characterized by the overproduction of histiocytes, leading to granulomas in many areas of the body. In about half of the cases, genetic changes in the BRAF gene appear to be involved;
Washington University Rare Diseases Care (@washurarecare) 's Twitter Profile Photo

Last week, the DeSanto-Shinawi Syndrome Conference and Clinic 2025 brought together families from Germany and across the United States. Participants contributed to the Natural History collection and fostered a strong sense of community. #DSSC2025 #DeSantoShinawiSyndrome

Last week, the DeSanto-Shinawi Syndrome Conference and Clinic 2025 brought together families from Germany and across the United States. Participants contributed to the Natural History collection and fostered a strong sense of community. #DSSC2025 #DeSantoShinawiSyndrome
CheckRare (@checkrare) 's Twitter Profile Photo

Scott Baver, PhD, Vice President of Medical Affairs at ITF Therapeutics, discusses long-term safety and efficacy data on givinostat for patients with Duchenne muscular dystrophy. checkrare.com/long-term-safe… #CheckRare #DMD #RareGenetic #RareMusculoskeletal #RareNeurology

Scott Baver, PhD, Vice President of Medical Affairs at ITF Therapeutics, discusses long-term safety and efficacy data on givinostat for patients with Duchenne muscular dystrophy.

checkrare.com/long-term-safe…

#CheckRare #DMD #RareGenetic #RareMusculoskeletal #RareNeurology
National Organization for Rare Disorders (NORD) (@rarediseases) 's Twitter Profile Photo

Today is #RareCancerDay! Watch our webinar “Biomarker Testing in Rare Cancers: From Barriers to Breakthroughs” to understand how #biomarkertesting is transforming rare #cancer care and how you can advocate for this critical tool to be more accessible. Watch here:

Washington University Rare Diseases Care (@washurarecare) 's Twitter Profile Photo

Thank you "Take Part" for your generous donation, that benefits children and families who otherwise could not afford the cost of genetic testing. We are grateful for your connection and partnership.

Thank you "Take Part" for your generous donation, that benefits children and families who otherwise could not afford the cost of genetic testing. We are grateful for your connection and partnership.
Washington University Rare Diseases Care (@washurarecare) 's Twitter Profile Photo

Innovation is always on the horizon WashU and potential healthcare applications are endless-Engineers create hydrogels to monitor activity in the body source.washu.edu/2025/10/engine…