Rare Genomics (@raregenomics) 's Twitter Profile
Rare Genomics

@raregenomics

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

ID: 346740364

linkhttp://raregenomics.org calendar_today01-08-2011 19:24:43

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9,9K Followers

3,3K Following

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New Blog Alert! Clinical trials offer hope for rare disease patients—but where do you start? Our latest blog breaks down the process of finding the right clinical trial, understanding existing roadblocks, and helps you to make informed decisions. shorturl.at/IDEhf

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Our countdown to the New Years is here! Celebrate 12 days with us where we spotlight our Rare Genomics volunteers and spread the joy of why we love volunteering! #GeneticMutations #ShowYourRare #Nonprofit #RareGenomics #RareDiseaseResearch

Our countdown to the New Years is here! Celebrate 12 days with us where we spotlight our Rare Genomics volunteers and spread the joy of why we love volunteering!

#GeneticMutations #ShowYourRare #Nonprofit #RareGenomics #RareDiseaseResearch
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This holiday, we celebrate the incredible volunteers at Rare Genomics who give their time, energy, and hearts to support rare disease patients and families. Why I volunteer for RG? youtu.be/D_UJkcdanVI?si…

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On the 1st day of this holiday season, we’re kicking off our celebration with a Rare Genomics patient! Today, we’re sharing a heartfelt quote from Elizabeth. Stay tuned as we continue to highlight many incredible patients and volunteers! 💙 #RareDiseases #PatientSpotlight

On the 1st day of this holiday season, we’re kicking off our celebration with a Rare Genomics patient! Today, we’re sharing a heartfelt quote from Elizabeth. Stay tuned as we continue to highlight many incredible patients and volunteers! 💙

#RareDiseases #PatientSpotlight
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🎁 Day 2 of our 12 Days of Holiday Countdown is here! Today, we’re spotlighting a volunteer who shares why being part of Rare Genomics means so much to them. Thank you to all our volunteers who bring hope and positivity to the rare disease community! 🌟 #RareDiseases

🎁 Day 2 of our 12 Days of Holiday Countdown is here! Today, we’re spotlighting a volunteer who shares why being part of Rare Genomics means so much to them. 

Thank you to all our volunteers who bring hope and positivity to the rare disease community! 🌟

#RareDiseases
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✨ On Day 3 of Christmas, we continue to celebrate our amazing volunteers! Here’s a quote from Natasha P, a Rare Genomics Volunteer Analyst, that perfectly captures the spirit of giving. Your efforts make a world of difference—thank you for being part of our mission! 💪

✨ On Day 3 of Christmas, we continue to celebrate our amazing volunteers! Here’s a quote from Natasha P, a Rare Genomics Volunteer Analyst, that perfectly captures the spirit of giving.

Your efforts make a world of difference—thank you for being part of our mission! 💪
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🎄 It’s Day 4 of our holiday countdown, and we’re so excited to share another inspiring volunteer story! Today’s quote comes from Jahnavi G, a volunteer on the Rare Genomics Innovation Team. Volunteers like Jahnavi remind us what the season of giving is truly about. 💙

🎄 It’s Day 4 of our holiday countdown, and we’re so excited to share another inspiring volunteer story! Today’s quote comes from Jahnavi G, a volunteer on the Rare Genomics Innovation Team.

Volunteers like Jahnavi remind us what the season of giving is truly about. 💙
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🌟 Day 5 is here, and we’re thrilled to highlight more of the incredible reasons our volunteers love working with Rare Genomics! Our volunteers' passion and dedication are truly the greatest gifts to the rare disease community. Thank you for all that you do! 🎁

🌟 Day 5 is here, and we’re thrilled to highlight more of the incredible reasons our volunteers love working with Rare Genomics!

Our volunteers' passion and dedication are truly the greatest gifts to the rare disease community. Thank you for all that you do! 🎁
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Merry Christmas! 🎄🎁 Rare Genomics (RG) wishes our community of patients, researchers, volunteers, advocates and families a holiday filled with comfort, warmth, and joy!

Merry Christmas! 🎄🎁 Rare Genomics (RG) wishes our community of patients, researchers, volunteers, advocates and families a holiday filled with comfort, warmth, and joy!
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🎁 On the 6th day of this holiday countdown, we’re honoring the selfless work of RG volunteer, Mark B. His words truly embody our non-profit’s spirit. #RareGenomics #VolunteerSpotlight #12DaysOfHolidays #RareDiseases #TogetherWeCan #GeneticMutations #ShowYourRare

🎁 On the 6th day of this holiday countdown, we’re honoring the selfless work of RG volunteer, Mark B. His words truly embody our non-profit’s spirit.

#RareGenomics #VolunteerSpotlight #12DaysOfHolidays #RareDiseases #TogetherWeCan #GeneticMutations #ShowYourRare
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It’s Day 7, and we’re sharing another reason why volunteering with Rare Genomics (RG) is so impactful. Here’s a quote from Elizabeth L, a RG patient advocate, sharing why she loves volunteering. #RareGenomics #VolunteerSpotlight #12DaysOfHolidays #RareDiseases #TogetherWeCan

It’s Day 7, and we’re sharing another reason why volunteering with Rare Genomics (RG) is so impactful. Here’s a quote from Elizabeth L, a RG patient advocate, sharing why she loves volunteering.

#RareGenomics #VolunteerSpotlight #12DaysOfHolidays #RareDiseases #TogetherWeCan
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RG is a non-profit community – run entirely by volunteers – to diagnose and treat individuals with rare conditions. But we can’t continue our work without your assistance. Take it from one of our amazing volunteers. Support our cause: raregenomics.org/rg-giving-tues…

RG is a non-profit community – run entirely by volunteers – to diagnose and treat individuals with rare conditions. But we can’t continue our work without your assistance. Take it from one of our amazing volunteers.

Support our cause: raregenomics.org/rg-giving-tues…
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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.

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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💜 We’re counting down to Rare Disease Day on February 28, 2025! Over 300 million people worldwide live with a rare disease—yet many still lack a diagnosis and treatment. At Rare Genomics, we’re committed to empowering families with genomic insights and expert connections.

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Rare Disease Day 2025 is on February 28th! We come together to raise awareness for those living with rare diseases. Did you know that 70% of genetic rare diseases start in childhood? At RG, we work to empower families by providing access to cutting-edge genomic insights.

Rare Disease Day 2025 is on February 28th! We come together to raise awareness for those living with rare diseases. Did you know that 70% of genetic rare diseases start in childhood? 

At RG, we work to empower families by providing access to cutting-edge genomic insights.
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February 28th is Rare Disease Day! This global movement raises awareness for rare diseases and highlights the urgent need for research, innovation, and advocacy. Join us in the lead-up to #RareDiseaseDay by spreading awareness and supporting the rare disease community. 💡💜

February 28th is Rare Disease Day! This global movement raises awareness for rare diseases and highlights the urgent need for research, innovation, and advocacy.

Join us in the lead-up to #RareDiseaseDay by spreading awareness and supporting the rare disease community. 💡💜
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RGs' Patient Research Services (RGPRS) connects rare disease patients to genomic research. When Ally’s family sought answers, RGPRS analyzed her genome and identified a histone-4 variant (H4C5) explaining her symptoms. Enroll as a new patient here: loom.ly/qt9fAv4

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RG gives rare disease patients access to modern genomics sequencing technology, connections to scientists and researchers and philanthropic opportunities. Shortening the diagnostic odyssey is our core mission. To apply as a new patient, click here: raregenomics.org/how-we-help-pa…

RG gives rare disease patients access to modern genomics sequencing technology, connections to scientists and researchers and philanthropic opportunities. Shortening the diagnostic odyssey is our core mission. To apply as a new patient, click here: raregenomics.org/how-we-help-pa…