Rare & Ready Coalition (@rare_ready) header
Rare & Ready Coalition (@rare_ready) profile picture

Rare & Ready Coalition

@rare_ready

Activating on state policies that ensure those with rare conditions get the care they need, when they need it. Social media guidelines https://nitter.gq/t.co/6ZYhchAmHS

rareandready.org
Joined January 2022
  • Tweets926
  • Following191
  • Followers270
623Media
Photo by Rare & Ready Coalition (@rare_ready)Photo by Rare & Ready Coalition (@rare_ready)Photo by Rare & Ready Coalition (@rare_ready)Photo by Rare & Ready Coalition (@rare_ready)Photo by Rare & Ready Coalition (@rare_ready)Photo by Rare & Ready Coalition (@rare_ready)Photo by Rare & Ready Coalition (@rare_ready)Photo by Rare & Ready Coalition (@rare_ready)Photo by Rare & Ready Coalition (@rare_ready)Photo by Rare & Ready Coalition (@rare_ready)
This National Family Caregivers Month share your #raredisease journey as a #caregiver. Let us hear your unique story. rareandready.org/shareyourex… #ShareYourStory #RareandReady
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Join @nnpdf Virtual Caregiver Support Summit on 11/17. #RareandReady ➡️us02web.zoom.us/webinar/regi…
Welcome! You are invited to join a webinar: Caregiver Support Summit. After registering, you will...

Welcome! You are invited to join a webinar: Caregiver Support Summit. After registering, you will...

Caregiving can change every part of life, from family relationships and daily responsibilities to how we see ourselves. While every caregiving journey is different, no one should have to navigate its...

us02web.zoom.us
NNPDF (@nnpdf) profile pictureNNPDF@nnpdfNov 4
Caregivers deserve care and support, too. 💙 Join NNPDF's Virtual Caregiver Support Summit on November 17 to connect with others, share experiences, and discover helpful resources for your well-being. 📅 Tuesday, November 17 | 7:30–9:00 PM ET 🔗 Register: t.ly/NNPDF-CargiverSupportSu…
Image from NNPDF (@nnpdf)
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Thanks for sharing @immunedeficienC! #RareandReady
Immune Deficiency Foundation (@immunedeficienC) profile pictureImmune Deficiency Foundation@immunedeficienCNov 3
Kids with #PrimaryImmunodeficiency might find it hard to explain their condition to friends or classmates. Learn how to approach the conversation and how it can actually strengthen friendships. bit.ly/4sib799
Kids Korner: Telling your friends about your immune deficiency | Immune Deficiency Foundation

Kids Korner: Telling your friends about your immune deficiency | Immune Deficiency Foundation

Talking about your primary immunodeficiency with your friends is easier than it seems, and it can actually make your friendships stronger.

primaryimmune.org
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Today is election day! Show your rare disease stripes and vote. #RareandReady
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November is ALD Awareness Month! 💙 ➡️ Learn more from our coalition member @NADF_Adrenal : nadf.us/ald. #RareandReady
Adrenoleukodystrophy/Adrenomyeloneuropathy — National Adrenal Diseases Foundation

Adrenoleukodystrophy/Adrenomyeloneuropathy — National Adrenal Diseases Foundation

nadf.us
The National Adrenal Diseases Foundation (@NADF_Adrenal) profile pictureThe National Adrenal Diseases Foundation@NADF_AdrenalNov 1
November is ALD Awareness Month! 💙 ALD is a rare genetic disorder affecting the brain, nervous system, and adrenal glands. Early diagnosis matters. Help us spread awareness. Learn more: nadf.us/ald.
"ALD AWARENESS MONTH" and "November 2026" with the NADF logo over a blue, abstract neural background.

ALT "ALD AWARENESS MONTH" and "November 2026" with the NADF logo over a blue, abstract neural background.

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👻Rare Disease Doesn’t Have to Be Scary 👻 This Halloween, we’re trading tricks for…treats of awareness! #RareDisease can feel like monsters lurking in the dark — mysterious, misunderstood, & frightening. Together, we can turn the scary into share-y! Share your rare story in the comments. #RareandReady
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Today is Dwarfism Awareness Day! More than 200,000 people in the U.S. live with dwarfism. Let’s stand #RareandReady by: 📢 Sharing facts to break myths 🤝 Supporting advocacy groups like @LPANational 💡 Promoting accessibility & inclusion
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Cast your vote for the @RareAdvocates #RAREArtist! rareadvocates.org/programs/r… #RareandReady
2026 RARE Artist Public Voting

2026 RARE Artist Public Voting

RARE Artist is a national advocacy program where the rare disease community uses art to share their stories and drive meaningful change.

rareadvocates.org
PA Rare Disease Advisory Council (@PARareDisease) profile picturePA Rare Disease Advisory Council@PARareDiseaseOct 21
Help us celebrate Pennsylvania’s rare disease community! A PA artist, Mary Sott, is a 2026 #RAREArtist finalist w/ "I Am Still Me". Read their story & cast your vote to support rare disease voices through art! 🗳️ rareadvocates.org/programs/r… #PaRare #RareDisease #Pennsylvania
2026 RARE Artist Public Voting

2026 RARE Artist Public Voting

RARE Artist is a national advocacy program where the rare disease community uses art to share their stories and drive meaningful change.

rareadvocates.org
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Are you going to @RareDiseases #NORDSummit? Drop us a comment and tell us what you hope to learn this year. #Advocacy #RareDisease #RareandReady
Image from Rare & Ready Coalition (@rare_ready)
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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
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Rare & Ready Coalition retweeted
MitoAction (@MitoAction) profile picture
MitoAction@MitoActionOct 15
Join us tonight at 6pm EST for our CPEO & Me Support Call! Visit this link to register and join us this evening. mitoaction.org/mitoaction-ev…
Image from MitoAction (@MitoAction)
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Rare & Ready Coalition retweeted
NNPDF (@nnpdf) profile picture
NNPDF@nnpdfOct 15
Shine a Light on Niemann-Pick Disease 🩵
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Learn about state Prescription Drug Affordability Boards (#PDABs), which hinder rare disease research & limit access to new treatments. bit.ly/PDABs #RareandReady
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October is Niemann-Pick Disease & ASMD Awareness Month! Learn more from our coalition partner @NNPDF at nnpdf.org. #niemannpick #NPC #raredisease #NiemannPickC #RareandReady
Image from Rare & Ready Coalition (@rare_ready)
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Rare & Ready Coalition retweeted
National Ataxia Foundation (@NAF_Ataxia) profile picture
National Ataxia Foundation@NAF_AtaxiaOct 7
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: us02web.zoom.us/meeting/regi…
Image from National Ataxia Foundation (@NAF_Ataxia)
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So much to celebrate in October! This month is National Disability Employment Awareness Month - advocating for greater inclusion and equal access. #NDEAM #RareandReady
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October is Dwarfism Awareness Month. Please follow and retweet our coalition members @thechandlerproj @magicfoundation @MPSSociety to support their efforts. #achondroplasia #dwarfismawareness #RareandReady
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Oct 12-13 = Colorado Rare Disease Fair! Featuring diagnostic odyssey, genetic testing, and gene therapy. rarediseasefair.org/ #RareandReady
Rare Disease Fair

Rare Disease Fair

Rare Disease Fairs aim to educate, engage, and inspire our community about the importance of rare disease research. Our goal is for all attendees to better understand how they can help with ending...

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