@RareGenomics

RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases.

raregenomics.org
Joined August 2011
  • Tweets3.3K
  • Following3.1K
  • Followers9K
792Media
On World Cancer Day, we highlight the connection between cancer and rare diseases. By raising awareness, let’s fight for higher awareness, wider research and better access to healthcare and treatment so that those with rare cancers can live with better support and care.
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There are now only 2 weeks to go until #RareDisease2024! We love reading all of your stories and seeing the awareness that you are raising. Don’t forget to tag us in your posts and stories. We’ll be sharing lots over the coming weeks. #RareDiseaseDay #StoriesBehindTheStats
2 weeks until Rare Disease Day on 29 February 2024

ALT 2 weeks until Rare Disease Day on 29 February 2024

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Did you know that 1 in 17 people will be affected by a rare condition at some point in their lives? For #RareDiseaseDay we're sharing stats around #RareConditions, and highlighting real stories behind them. Share these figures to help spread the word. #StoriesBehindTheStats
A colourful dotted border around bold and colourful text that reads '1 in 17 people will be affected by a rare condition at some point in their lifetime'

ALT A colourful dotted border around bold and colourful text that reads '1 in 17 people will be affected by a rare condition at some point in their lifetime'

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The Festival of Genomics & Biodata is returning to Boston this fall. The Festival is jam-packed with incredible speakers, sessions, experiences and networking. Join 2,000+ attendees for an experience like no other by registering here: hubs.la/Q01YrQ0j0 #FoGBoston
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Urgent Organization Level Sign-On Opportunity: Tell the Senate to Include the #RAREAct in #FDALSA Sign on: lnkd.in/gMKC5V5E Note: This is an organization-level sign on letter, not an individual sign on letter. Deadline is 3pm ET on Friday, June 3. #PDUFA #RareDisease

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lnkd.in
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30 million people in Europe live with some form of Rare Disease. This is equivalent to: The population of Ghana The population of Yemen Twice the population of Istanbul 3 times the population of Seoul And 33 times the capacity of Wembley Stadium
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19 year-old Annie is a college student living with Morquio A Syndrome. Whilst many of her classmates underestimate her, Annie strives to be both independent and successful. 👉 Read Annie’s story: cutt.ly/AAJSYLG 👉 Share your own: cutt.ly/EPlcuja
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Rare Genomics retweeted
Pfizer Inc.
@pfizer22 Feb 2022
We believe Rare is REAL. We are investigating potentially life-changing therapies for people living with rare genetic diseases and their families. Learn more about our commitment to those with a rare disease. #RareDiseaseDay on.pfizer.com/3GXMIwp

#RareDiseaseDay

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Did you know that 3.5 million in the UK are affected by a rare condition? That’s 1 in 17 people! RT if you're one of them and tell us about your experiences. #RareDisease #RareDiseaseDay2022 @GeneticAll_UK @rarediseaseuk
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Tomorrow is #RareDiseaseDay 💜💚💙 How are you planning on getting involved? Let us know in the comments below! 👇👇👇
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We ❤️ seeing initiatives to support the use of rapid #WholeGenomeSequencing as a diagnostic test for critically ill babies with #raredisease. Last year, Michigan made rWGS a Medicaid-covered benefit for eligible infants in the ICU. radygenomics.org/case-studie… #ProjectBabyDeer

Michigan: Project Baby Deer | RCIGM

Inspired by the success of Project Baby Bear, other states are following with their own programs to publicly fund rapid Whole Genome Sequencing for infants.

radygenomics.org
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Rare Genomics retweeted
Genomenon@genomenon22 Feb 2022
🧬📖 Day 2 of our Our Rare Stories #blog shines a light on @Dont4getMorgan & features the inspiring story of how a single research paper found in #MastermindGSE lead to a diagnosis for @RareGenomics. Read today's post here: genomenon.com/blog/our-rare-… #genomics #CureBPAN
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As we get closer to #RareDiseaseDay, NORD is sharing Riaan’s Cockayne syndrome diagnosis and his family's hopes for the #RareDisease community. Read his full story on NORD’s blog: bit.ly/3rDiOcw
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As #RareDiseaseDay approaches, NORD will be highlighting several #RareDiseases. #SickleCell disease affects about 100,000 Americans. Check out NORD's member orgs that specialize in sickle cell disease, including @SickleCellHOU: bit.ly/34stjGZ
Blue and orange background with text reading, "Did you know? An inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels. It affects approximately 100,000 Americans and occurs among 1 out of every 365 Black or African American births." NORD logo on bottom.

ALT Blue and orange background with text reading, "Did you know? An inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels. It affects approximately 100,000 Americans and occurs among 1 out of every 365 Black or African American births." NORD logo on bottom.

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Are you raising awareness for Rare Disease Day this year? Using #RareDiseaseDay helps members of the rare disease community find each other, build solidarity, and get involved in Rare Disease Day. Find out how you can get involved: cutt.ly/dPlzx3U
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New #webinar: "Advancing Equity in Rare Healthcare” on February 23 at 2pm ET. Join #NORD for the second part in a #DEI webinar series focusing on the role #HealthCare providers and health systems play in promoting equity in healthcare settings. Register: bit.ly/3umcbwW
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In honor of #RareDiseaseDay, @jacksonlab recently launched a new e-book chronicling the #RareDisease odyssey through beautiful imagery and storytelling. Check out the new resource for the community here: bit.ly/3uo5NoM
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5 year old Nora from France is living with Pantothenate kinase-associated neurodegeneration (PKAN) Nora is a true ray of sunshine who inspires her family with her strength and courage every day. ☀️ ➡️Read Nora's story in French: cutt.ly/ZOTkGEq
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People with #RareDiseases face health challenges & few treatments. An @ncats_nih_gov-led study shows they also face 3–5 times higher #healthcare costs than those without a rare disease. Learn more about this impact at #RareDiseaseDay at @NIH 2022: go.usa.gov/xeMGH #RDDNIH
White background with blue, pink and green Rare Disease Day logo. Text reads, "Rare Disease Day at NIH Feb. 28, 2022 #RDDNIH Virtual Conference"

ALT White background with blue, pink and green Rare Disease Day logo. Text reads, "Rare Disease Day at NIH Feb. 28, 2022 #RDDNIH Virtual Conference"

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Feb 28th is Rare Disease Day, join me and other physicians along with @RareDiseases in a tweet chat if you can. It should be an enlightening and engaging discussion! #RareDiseaseDay #RareDisease
Patient Worthy@PatientWorthy7 Feb 2022
Join @RareDiseases and @TheRealDoctorT for #RDDChat22 on Feb. 28 @ 6:30pm ET. Don't miss out on Dr. T and other physicians answering #raredisease related questions!
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