CAL RARE

Non-profit dedicated to improving the lives of rare disease patients in California.

[Global Genes @GlobalGenes]

Here is the breakfast reception going on before the start of the Legislative Conference! We are set up in the Atrium, so if you’re in person, make sure to stop by and say hello 👋 #RareDiseaseWeek #RareDiseaseDay #CapitolHill #WashingtonDC #CareAboutRare

[UCSF Benioff SF @UCSFChildrens]

For newborns with rare diseases like Charlotte, rapid whole genome sequencing is faster than other testing options. Without testing, “it can take months or even years for babies with unusual symptoms to get diagnosed,” Dr. Arthur D’Harlingue says. https://t.co/3ZzvJ4qUg4

[CAL RARE @CalRare]

“…chicken and egg dilemmas. You do not have a therapy, you can’t get a diagnosis. You have a diagnosis, but you can’t get access. You have a therapy and access, but you can’t get it in the state you are moving to.” Matthew Ellinwood PhD #RareDC2024 #RareDiseaseTruth

[RDLA @RareAdvocates]

"Each one of you is a catalyst, and each of your unique stories are powerful and will help us unstick this system that needs our attention very much." Matthew Ellinwood @NationalMps #RareDC2024

[CAL RARE @CalRare]

The @IVI_health and @EveryLifeOrg project is paving the way for patient-centered outcomes. Cal Rare was honored to take part. Join the fight! #RareDiseaseResearch #PatientVoice Read the paper here: https://t.co/sI7GQamYdA

[NCATS @ncats_nih_gov]

#RDDNIH 2024: Session 1 on #ArtificialIntelligence and Its Potential Role in #RareDiseases.

Hear from panelists from @UBCPharma, @IcahnMountSinai and NCATS. View the agenda & download the free event app to personalize your schedule: https://t.co/nH549owcPk #RareDiseaseDay

[CA Health & Human Services @Cal_HHS]

DEADLINE EXTENDED: You now have until February 9 to enroll in health insurance through @CoveredCA that will be effective February 1 at https://t.co/w2wyGrm46q.

[CAL RARE @CalRare]

Founder/President Angela Ramirez Holmes and Board Member Julia Jenkins are in Sacramento today for the Newborn Screening Symposium. Pictured here with partners from Expecting Health and National MPS Society. 🧡 #APHLNBS

[CAL RARE @CalRare]

Go Jordan’s Guardian Angels! ❤️#Awareness #Research

[Jordan’s Syndrome @JordansGAngels]

Have you heard? Our Co-Founders Cynthia and Joe Lang were featured on CBS Saturday Morning! Watch as Jordan's Guardian Angels makes its network news debut. Hope you enjoy and THANK YOU @cbsnews @cbsmornings #poweredbyangels #jgaint #angelpower
https://t.co/fDdfLPE9VX

[Eric Green @NHGRI_Director]

Are you curious to ‘visit’ the NIH campus but can’t get to Bethesda to do so? I encourage you to take the new #NIH Virtual Tour! Explore @NIH via an interactive map and get to know the people who are working to turn scientific discoveries into health: https://t.co/vrwK7u1iBy

[RDLA @RareAdvocates]

Advocates, set your Rare Across America reminders! This August meet with your Members of Congress at their in-district offices and educate them on the issues that are most important to you and the rare disease community.

Haven't registered? Please visit https://t.co/XmNFgjzp4i!

[CA Health & Human Services @Cal_HHS]

Trauma support and crisis recovery resources are available to all Californians.

If you need help, reach out: https://t.co/JICutKnFvR

[Unique @Unique_charity]

Today is #rarechromoday - a day to celebrate all those living with rare #chromosome and #gene disorders & their families, and to raise awareness. Share our posts, wear blue & yellow & let's loudly and proudly celebrate Uniqueness! #genomics #genetics

[FOXG1 Research @Foxg1Research]

Introducing Joyfully Josie, a new children’s book written by our co-founder @NicoleZJohnson1 to help teach all children about disabilities, rare diseases, and inclusion at a young age! https://t.co/ZLzHF2DjsY

[CAL RARE @CalRare]

Pres Angela Ramirez Holmes gave testimony to CA Med Board today re the right of terminal patients to access out of state telehealth. We will always speak up for rare patients to have access to needed physicians and treatments. Listening to patients is the key to good policy!

[Brian Maienschein @BMaienschein]

1 in 10 Californians are living with a rare disease. In recent years, telehealth has become a vital tool for patients to access the care they need. As Chair of the Rare Disease Caucus, I'm committed to advocating for the nearly 4 million rare disease patients in our state. #CALeg

[CAL RARE @CalRare]

@BMaienschein Thank you for your leadership!

[CAL RARE @CalRare]

Did you miss the livestream of today’s CA State Legislative Rare Disease Caucus briefing? Watch it here! #CALegislativeRareDiseaseCaucus

https://t.co/cZNQyGMpH5

[California DMHC @CADMHC]

The #DMHC is raising awareness that if a health plan enrollee cannot find a mental health provider in their health plan network, the health plan MUST arrange & pay for out-of-network services at no additional cost. Info: https://t.co/bPEibRkA6u

#MHAM #GoldenStateofMind