Approved Community Messages

The below Twitter-friendly messages are approved by each organisation to be shared on Facebook, Twitter, Instagram, or whatever social platform you use! By sharing these messages, you’re helping each community reach a larger audience than they normally would.

A DNA helix with the the text ACNRF
Angelina Cask Neurological Research Foundation

Angelina Cask Neurological Research Foundation aims to advance medical research on the nature, diagnosis, prevention & treatment of CASK gene mutations. We will #dazzle4rare in 2022. #StrongerTogether

ausEE logo

ausEE Inc. is Australia’s peak charity for eosinophilic gastrointestinal disorders (EGID). Our mission is to improve the lives of those affected by EGIDs by providing support, evidence-based information, resources and campaigning to raise awareness and funds for further research. #dazzle4rare

Ataxia and Me
Ataxia and Me

Ataxia patients are often accused of being drunk, because their symptoms include slurred and unclear speech, slowed eye movements, and swallowing problems, as well as issues with balance and coordination #ataxia #patients group #charity #Cymru #Wales #dazzle4rare

Alex TLC Support
Alex TLC Support

Our mission is to make a difference to those affected by a genetic leukodystrophy. There are over 50 different Leukodystrophies; Alex TLC focuses on the similarities caused, embracing all affected within a community of Tender Loving Care #dazzle4rare

GYNCSM Community

#GYNCSM (Gynecological Cancers Social Media)Let’s #Dazzle4Rare – Learn about some of the rare gynecologic cancers #gyncsm

Most gynecologic cancers are classified as rare diseases. Know your body and act when symptoms last for longer than 2 weeks. #Dazzle4Rare #gyncsm

Central Nerve Pain Center logo
Central Nerve Pain Center logo

Central Pain Nerve Centre

Where Intractable Pain meets Patient Advocacy
Research, Educate, Advocate
We are #TheIntractables #dazzle4rare

Flutters and Strutters logo

We #dazzle4rare #strutourstripes for #EhlersDanlosSyndromes and support #dazzle4rare2020 #EDS #HypermobilitySpectrumDisorders COMING SOON #watchthisspace for #ZebraStrutters at @FibroFlutters #RareDiseases #community

Gastroparesis: Fighting for Change
Gastroparesis: Fighting for Change logo

Want 2 make a difference 4 the #Gastroparesis community? Join us on FB or see #Dazzle4Rare

Male Lupus Warriors
Male Lupus Warriors

Our mission is to spread Lupus Awareness, Education and Inspiration. We Strengthen your Mental Health towards your Disease while Inspiring you to Not be a Victim to your Illness. #Dazzle4Rare

New HESA Logo
Hashimoto's Encephalopathy SREAT Seronegative Autoimmune Encephalitis Alliance
HESA logo

Hashimoto’s Encephalopathy SREAT Alliance

In August, we #dazzle4rare to represent Hashimoto’s Encephalopathy/SREAT and Seronegative AE. Visit our website for resources and more:

A stethoscope with the text Diagnosed with Destiny
Diagnosed with Destiny

We advocate alongside those with one or a myriad of diagnoses; believing that through love and unity. #Dazzle4Rare

Float like a Buttahfly
Float like a Buttahfly

#Sarcoidosis can affect any part of the body, easily making us feel beaten down. #SarcStrong embodies the strength and resilience of #SarcWarriors. Use it to show strength when you’re feeling it or to manifest it when you’re needing it. ~🦋#dazzle4rare

PIP Support UK
PIP UK – Poland Syndrome Support & Network

Come join us #dazzle4rare! @PIPManchester launched a global register for Poland Syndrome this year and we need HCPs and researchers to help get research off the ground. Check out the registry and what it means to our community. DM for details

NCBRS Foundation
NCBRS Foundation

The NCBRS Worldwide Foundation supports and educates families, carers and professionals who work with people diagnosed with Nicolaides-Baraitser Syndrome. Very little is known about #NCBRS and there are fewer than 260 known cases around the world. We are proud to #Dazzle4Rare.

Rare Disease Connection
Rare Disease Connect logo

Rare Disease Connection
Alone we are rare, together we can accomplish the impossible! This is why we #dazzle4Rare

RSDA logo
RSDA logo

RSDSA’s mission is to provide support, education, and hope to all affected by the pain and disability of #CRPS/RSD, while they drive research to develop better treatments and a cure. Their team and Warriors always #dazzle4rare. Learn more about them at!

Rare Revolution Magazine
Rare Revolution Magazine logo

RARERevolution will #Dazzle4Rare this August, will you join us in helping to give a voice to all RARE conditions? Find us @RareRevolutionM @RareRevolutionMagazine and read our latest edition RARE here

Rare Youth Revolution

The RARE Youth Revolution is a dedicated platform for young people to access relevant content centered around rare diseases. Approximately 400 million people worldwide live with a rare disease, almost 50% of these are children and young people. #Dazzle4Rare

Businesses & Brands

Rare Patient Voice, LLC

Rare Patient Voice
RPV connects rare & non-rare disease patients & family caregivers with opportunities to take part in research, which can help improve lives. Your voices & time are valuable & we pay for your participation. Visit us at! Dazzle4Rare #patients #caregivers

Advocates & Allies

Judy the Advocate

United Advocacy Australia – United We Stand Hand to Hand

United Advocacy Australia @unitedadvocacy unites with non-profit organizations around the globe, helping to raise awareness for many conditions. Let’s #Dazzle4Rare!

Click to go directly to #Dazzle4Rare on social media

Dazzle4Rare text-only logo on white background. It reads, "Dazzle4Rare We are Rare Family"

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Black text on white background. Signalise text-only logo reads, "Signalise a dazzle4rare podcast"