RareShare is a social platform building communities for patients, families, and healthcare professionals affected by rare medical disorders.
Joined June 2011
- Tweets 1,937
- Following 1,835
- Followers 4,681
- Likes 715
239 Photos and videos
Pinned Tweet
30 May 2021
Listen to RareShare's latest podcast with Geraldine Renton, book author and Irish mother of a Hunter Syndrome child:
ow.ly/pfoE50EYza9
1
5
2 Mar 2025
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. š”š
3
7
253
26 Feb 2025
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=5-qUā¦
1
97
19 Feb 2025
š Weāre counting down to Rare Disease Day on February 28, 2025! Over 300 million people worldwide live with a rare diseaseāyet many still lack a diagnosis and treatment.
At @RareGenomics, weāre committed to empowering families with genomic insights and expert connections.
52
27 Dec 2024
RG is a non-profit community ā run entirely by volunteers ā to diagnose and treat individuals with rare conditions. But we canāt continue our work without your assistance. Take it from one of our amazing volunteers.
Support our cause: raregenomics.org/rg-giving-tā¦
1
47
26 Dec 2024
Itās Day 7, and weāre sharing another reason why volunteering with Rare Genomics (RG) is so impactful. Hereās a quote from Elizabeth L, a RG patient advocate, sharing why she loves volunteering.
#RareGenomics #VolunteerSpotlight #12DaysOfHolidays #RareDiseases #TogetherWeCan
48
26 Dec 2024
š On the 6th day of this holiday countdown, weāre honoring the selfless work of RG volunteer, Mark B. His words truly embody our non-profitās spirit.
#RareGenomics #VolunteerSpotlight #12DaysOfHolidays #RareDiseases #TogetherWeCan #GeneticMutations #ShowYourRare
47
24 Dec 2024
š Day 5 is here, and weāre 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! š
#raredisease
39
21 Dec 2024
š Itās Day 4 of our holiday countdown, and weāre so excited to share another inspiring volunteer story! Todayās 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. š
42
20 Dec 2024
āØ On Day 3 of Christmas, we continue to celebrate our amazing volunteers! Hereās a quote from Natasha P, a Rare Genomics Analyst, that perfectly captures the spirit of giving.
Your efforts make a world of differenceāthank you for being part of our mission! šŖ
27
19 Dec 2024
š Day 2 of our 12 Days of Holiday Countdown is here! Today, weāre 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! š
#RareDiseases
26
19 Dec 2024
On the 1st day of this holiday season, weāre kicking off our celebration with a Rare Genomics patient! Today, weāre sharing a heartfelt quote from Elizabeth. Stay tuned as we continue to highlight many incredible patients and volunteers! š
#RareDiseases #PatientSpotlight
28
17 Dec 2024
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=RPDzā¦ via @YouTube
27
17 Dec 2024
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
26
11 Dec 2024
New Blog Alert! Clinical trials offer hope for rare disease patientsābut 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
1
25
6 Dec 2024
If Giving Tuesday slipped your mind, donāt worryāyou 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-tā¦
1
40
4 Dec 2024
Missed Giving Tuesday? Itās Not Too Late to Make a Difference!
You can still support families impacted by rare diseases today! Every contribution counts toward changing lives. Donate now and make an impact: raregenomics.org/rg-giving-tā¦
#RareDisease #GivingTuesday2024
14
3 Dec 2024
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!
š Donate today and make an impact: raregenomics.org/rg-giving-tā¦
23
7 Nov 2024
We're thrilled to introduce our latest blog post on the groundbreaking role of AI in healthcare! šš§¬ Discover how AI is transforming genomic sequencing, making diagnostics faster and more precise, and opening new doors for treating rare diseases.
raregenomics.org/news-eventsā¦
22
2 Oct 2024
Exciting news for rare disease patients! Rare Genomics Institute has partnered with Bodimetrics to offer free wearable health devices to qualified patients.
To enroll with RareWear, click here: raregenomics.wufoo.com/formsā¦
#wearables #raredisease #diseasemonitoring #nonprofit
1
46
29 Sep 2024
Urgent action needed! The Creating Hope Reauthorization Act is key to supporting children with rare diseases. We canāt let the progress stop here! Contact your Senator TODAY! @RareDiseases
Before September 30th, Take Action!: rarediseases.org/driving-polā¦
1
77