Rare Genomics Institute
@raregenomics.bsky.social
Rare Genomics Institute (RG) is a 501(c)3 non-profit organization committed to filling the unmet needs of patients and families affected by rare diseases.
https://www.raregenomics.org/
https://www.raregenomics.org/
Pinned
🌟 Hi, we are Rare Genomics Institute (RG), a 501-(c)3 non-profit with the mission to empower rare disease patients and their families by connecting them with cutting-edge genetic research, resources, and a supportive global community.
We’re thrilled to bring our journey to BlueSky! 💙✨ Follow us!
We’re thrilled to bring our journey to BlueSky! 💙✨ Follow us!
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: www.raregenomics.org/rg-patient-a...
#raredisease
#raredisease
RG Patient Application Form — Rare Genomics Institute
www.raregenomics.org
April 9, 2025 at 1:18 AM
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: www.raregenomics.org/rg-patient-a...
#raredisease
#raredisease
February 28th is Rare Disease Day! This global movement raises awareness for rare diseases and highlights the urgent need for more research, innovation, and advocacy.
At Rare Genomics Institute, we connect families with genomic experts to help push for faster, more precise diagnoses.
At Rare Genomics Institute, we connect families with genomic experts to help push for faster, more precise diagnoses.
March 2, 2025 at 1:51 AM
February 28th is Rare Disease Day! This global movement raises awareness for rare diseases and highlights the urgent need for more research, innovation, and advocacy.
At Rare Genomics Institute, we connect families with genomic experts to help push for faster, more precise diagnoses.
At Rare Genomics Institute, we connect families with genomic experts to help push for faster, more precise diagnoses.
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?...
Hear from our volunteers:
youtu.be/D_UJkcdanVI?...
Why I volunteer for RG
YouTube video by Rare Genomics
youtu.be
February 26, 2025 at 1:33 AM
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?...
Hear from our volunteers:
youtu.be/D_UJkcdanVI?...
💜 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.
#RareDiseaseAwareness
At @RareGenomics, we’re committed to empowering families with genomic insights and expert connections.
#RareDiseaseAwareness
February 19, 2025 at 2:23 AM
💜 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.
#RareDiseaseAwareness
At @RareGenomics, we’re committed to empowering families with genomic insights and expert connections.
#RareDiseaseAwareness
🌟 New Blog Alert! 🌟
Clinical trials offer hope—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.
Clinical trials offer hope—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.
Navigating Clinical Trials: A Guide for Rare Disease Patients — Rare Genomics Institute
A condition is defined as a rare disease if it affects fewer than 200,000 individuals. Approximately 7,000 conditions meet this definition. In 2016, the United States Food and Drug Administration awar...
www.raregenomics.org
December 11, 2024 at 3:01 AM
🌟 New Blog Alert! 🌟
Clinical trials offer hope—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.
Clinical trials offer hope—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.
🌟 Hi, we are Rare Genomics Institute (RG), a 501-(c)3 non-profit with the mission to empower rare disease patients and their families by connecting them with cutting-edge genetic research, resources, and a supportive global community.
We’re thrilled to bring our journey to BlueSky! 💙✨ Follow us!
We’re thrilled to bring our journey to BlueSky! 💙✨ Follow us!
December 11, 2024 at 2:32 AM
🌟 Hi, we are Rare Genomics Institute (RG), a 501-(c)3 non-profit with the mission to empower rare disease patients and their families by connecting them with cutting-edge genetic research, resources, and a supportive global community.
We’re thrilled to bring our journey to BlueSky! 💙✨ Follow us!
We’re thrilled to bring our journey to BlueSky! 💙✨ Follow us!