RareShare

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RareShare

RareShare

@RareShareOrg

RareShare is a social platform building communities for patients, families, and healthcare professionals affected by rare medical disorders.

Katılım Haziran 2011
1.8K Takip Edilen4.7K Takipçiler
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RareShare
RareShare@RareShareOrg·
Listen to RareShare's latest podcast with Geraldine Renton, book author and Irish mother of a Hunter Syndrome child: ow.ly/pfoE50EYza9
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RareShare
RareShare@RareShareOrg·
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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RareShare
RareShare@RareShareOrg·
Volunteers at #Rare Genomics Institute (RG) are advocates for patients with rare diseases. Our services #empower patients to push forward towards a diagnosis and provide hope for a cure. Hear from our volunteers: youtu.be/D_UJkcdanVI?si…
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RareShare
RareShare@RareShareOrg·
💜 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 @RareGenomics, we’re committed to empowering families with genomic insights and expert connections.
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RareShare
RareShare@RareShareOrg·
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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RareShare
RareShare@RareShareOrg·
🌟 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! 🎁 #raredisease
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RareShare
RareShare@RareShareOrg·
🎄 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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RareShare
RareShare@RareShareOrg·
✨ On Day 3 of Christmas, we continue to celebrate our amazing volunteers! Here’s a quote from Natasha P, a Rare Genomics 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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RareShare
RareShare@RareShareOrg·
🎁 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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RareShare
RareShare@RareShareOrg·
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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RareShare
RareShare@RareShareOrg·
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… via @YouTube
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RareShare
RareShare@RareShareOrg·
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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RareShare
RareShare@RareShareOrg·
If Giving Tuesday slipped your mind, don’t worry—you can still make a meaningful impact! Your donation to Rare Genomics supports rare disease patients by funding: --Rare disease genetic testing --Research for rare conditions --Support for families raregenomics.org/rg-giving-tues…
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RareShare
RareShare@RareShareOrg·
Rare Genomics is dedicated to empowering families and advancing discoveries for rare disease patients. Your generosity this #GivingTuesday can help fund diagnostics, research, and advocacy for those who need it most! 👉 Donate today and make an impact: raregenomics.org/rg-giving-tues…
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RareShare
RareShare@RareShareOrg·
We're thrilled to introduce our latest blog post on the groundbreaking role of AI in healthcare! 🌐🧬 Discover how AI is transforming genomic sequencing, making diagnostics faster and more precise, and opening new doors for treating rare diseases. raregenomics.org/news-events-an…
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RareShare
RareShare@RareShareOrg·
Urgent action needed! The Creating Hope Reauthorization Act is key to supporting children with rare diseases. We can’t let the progress stop here! Contact your Senator TODAY! @RareDiseases Before September 30th, Take Action!: rarediseases.org/driving-policy…
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