Rare & Ready Coalition

Activating on state policies that ensure those with rare conditions get the care they need, when they need it. Social media guidelines

[Rare & Ready Coalition @rare_ready]

Are you going to @RareDiseases #NORDSummit? Drop us a comment and tell us what you hope to learn this year. #Advocacy #RareDisease #RareandReady

[Rare & Ready Coalition @rare_ready]

While we enjoy the cozy flavors of the season, let’s remember that for millions living with rare diseases, every season comes with unique challenges.

Add some pumpkin spice to your life! #RareDisease #PumpkinSpiceSeason #RareandReady

[Rare & Ready Coalition @rare_ready]

@JettFoundation Hope it was a great event!

[MitoAction @MitoAction]

Join us tonight at 6pm EST for our CPEO & Me Support Call! Visit this link to register and join us this evening. https://t.co/0s3AfH8fNn

[NNPDF @nnpdf]

Shine a Light on Niemann-Pick Disease 🩵

[Rare & Ready Coalition @rare_ready]

Learn about state Prescription Drug Affordability Boards (#PDABs), which hinder rare disease research & limit access to new treatments. https://t.co/4u7LUIBHXv #RareandReady

[Rare & Ready Coalition @rare_ready]

October is Niemann-Pick Disease & ASMD Awareness Month! Learn more from our coalition partner @NNPDF at https://t.co/O0xZ0iLQ1D.
#niemannpick #NPC #raredisease #NiemannPickC #RareandReady

[Rare & Ready Coalition @rare_ready]

@NAF_Ataxia These advocates are #RareANDReady!

[National Ataxia Foundation @NAF_Ataxia]

The holidays can be challenging when you're grieving. Join us Nov. 5 at 12 PM CT for a special Remembrance Event with Amy Fowler as we discuss ways to support one another through loss and remembrance.

Register Today: https://t.co/HwZhrEwsvC

[Rare & Ready Coalition @rare_ready]

So much to celebrate in October! This month is National Disability Employment Awareness Month - advocating for greater inclusion and equal access. #NDEAM #RareandReady

[Rare & Ready Coalition @rare_ready]

October is Dwarfism Awareness Month. Please follow and retweet our coalition members @thechandlerproj @magicfoundation @MPSSociety to support their efforts. #achondroplasia #dwarfismawareness #RareandReady

[Rare & Ready Coalition @rare_ready]

Oct 12-13 = Colorado Rare Disease Fair! Featuring diagnostic odyssey, genetic testing, and gene therapy. https://t.co/tktRulZQss

#RareandReady

[Rare & Ready Coalition @rare_ready]

Today is International Gaucher Awareness - the official kickoff for Gaucher Disease Awareness Month, which runs throughout the entire month of October!

@IGAgaucher asks states to add #Gaucher to #NewbornSreening panels. #GaucherAwarenessMonth #RareandReady

[Rare & Ready Coalition @rare_ready]

Thank you @AsmRickZbur for introducing AB 1887 and thank you to @CAgovernor for signing AB 1887 into law! #RareandReady

[Rare & Ready Coalition @rare_ready]

NEW ENGLAND - this is for you! Oct 6-7. @RareAdvocates hosting a VIRTUAL day of action for residents of New England states to meet state legislators, share stories, and help advance policy priorities. Contact [email protected]

[Wisconsin Rare Disease Alliance @WiRareAlliance]

A baby can look perfectly healthy and still have a serious condition. Newborn screening looks for concerns before symptoms appear. #NewbornScreening #EarlyDetection #statezebranetwork

[Rare & Ready Coalition @rare_ready]

Are you living with a #RareDisease? Are you using state Medicaid resources? We want to hear from YOU! Your experiences can help shape policies to better support the #RareandReady community.

🙂 Share your story https://t.co/nwXGsqjqKl

[Rare & Ready Coalition @rare_ready]

This week = Telehealth Awareness Week!
Week of conversations re: AI. Virtual nursing. Patient-centered design. Digital therapeutics. Rural access. Policy. Clinician workflows. Plus plenty of real-world insights and practical takeaways. https://t.co/oqI4UEnTtk

[Rare & Ready Coalition @rare_ready]

@CAgovernor Newsom signed AB 1887 into law.

Thank you to all the #RareandReady members that helped make this happen!

[MitoAction @MitoAction]

Today, we recognize LHON Awareness Day. 💚

Share this post and help us put LHON—and mitochondrial disease—on the map. 🌎

#LHONAwarenessDay #WorldMitoWeek2026 #PuttingMitoOnTheMap #MitochondrialDisease