We who live with rare diseases feel alone, but collectively we are many, and we are strong. You count! Tell us about your disease, and let's build the virtual army needed to persevere @geneticalliance @LunaDNA_ id.lunadna.com/referrer/peer-… #RareDiseaseDay

Your experience counts, tell us about it here on this #RareDiseaseDay2023 : id.lunadna.com/referrer/peer-… #RareDiseases #RareDiseaseDay #DíaMundialDeLasEnfermedadesRaras

Researchers and Policy-makers need to know your needs. Tell us about your #RareDisease . id.lunadna.com/referrer/peer-… #RareDiseaseDay #RareDiseaseDay2023 #RareDiseases

Sometimes those of us in rare disease families are struck with the phrase - but it is so rare, 1 in 100,000 or 1 in a million. But for us, it is 100%. In My Life as a numerator, I describe how it is for those of us who live here. ncbi.nlm.nih.gov/pmc/articles/P… #RareDiseaseDay2023

Sometimes a rare disease is so rare, you don't have any company. When you have no home (support group, patient group), we offer you a haven. Be heard, be counted: id.lunadna.com/referrer/peer-… Genetic Alliance @LunaDNA_ #RareDiseaseDay2023 #rarediseaseday #RareDisease

Let’s Measure Burden of Disease Collectively - mailchi.mp/geneticallianc…

Let’s measure burden of #disease collectively. mailchi.mp/geneticallianc… #RareDisease #study #diseases #conditions #rarediseases

Genetic Alliance is launching a burden of #disease study. We seek to give #advocacy organizations and #communities the data they need to assure all interested parties that the disease burden in their community can be measured and communicated. geneticalliance.org/events/webinar…

What is the current overall health status of people living with #Chiari, #syringomyelia & related disorders? The truth is, we actually aren't sure... But you can help change that! Participate in the Genetic Alliance survey now in the patient registry: bit.ly/bjcsfregistrym… 1/5

Travera and Genetic Alliance Join Forces to Expand Access to Innovative Cancer Treatment s.einnews.com/JUVDJbEYoa

A fun and fabulous interview!

Today is the 1st day of #NewbornScreeningAwarenessMonth & this year marks 60 years of #NBS! We have many events and activities planned to help you celebrate this milestone while raising awareness for NBS. Click here to learn more: bit.ly/45wtz1B #2023NBS #NBS60Years

Elon, I hope you took a long hard look at the implications before you decided to live-stream from the USA 🇺🇸 border, where countless migrants are battling the harsh realities of life. You sit there, the wealthiest man on this planet 🌎, amidst the very embodiment of poverty and

Discover why Genetic Alliance IRB is perfect for your research! With 20+ years of experience, we oversee registry data, biospecimen collection, and more. Fast, affordable, and OHRP-certified, we review all research. Email [email protected] to start. #GeneticAllianceIRB

Genetic Alliance sends our staff to this meeting every year. Unparalleled in our field! #ashg2024

Simone Biles throws shade at Donald Trump.

Thrilled to announce the 10 clinical sites joining iHope Genetic Health network: world.einnews.com/pr_news/736450… These clinical sites are sending samples from undiagnosed kids to our three labs offering probono services. Thanks to Illumina for their generous support! #undiagnosed

Genetic Alliance has a piece in the Guardian today. iHope Genetic Health - pro bono genetic testing for undiagnosed children from under-resourced communities. Thanks to our partners! @ihopegenetichealth healthawareness.co.uk/rare-diseases/… #RareDiseases2024 #ihopegenetichealth

Black Friday. Do we have a deal for you! Just $99.99 (OK, actually $100) you can enable a baby or child from an under-resourced community (LMIC) to receive clinical genomic testing and get on their way to a diagnosis. This is a phenomenal deal. Act now! zeffy.com/fundraising/e9…

Thanks to all who signed this letter thanking Federal workers - drive.google.com/.../10.../view... Please share it with your favorite federal staff!