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.

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

ANE International
ANE International logo

ANE International is an international family based initiative that bring awareness to Acute Necrotizing Encephalopathy (ANE) on July 31st every year, provide support to families and education families & support team. Acute Necrotizing Encephalopathy is caused by a viral or bacterial infection that leads to neurological changes and brain injury. #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

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

Cambridge Rare Disease Network
Cambridge Rare Disease Network logl

@camraredisease showcasing the best innovators & initiatives helping those affected by rare to live more connected, independent & healthy lives. Check out #RAREfest20 coming in Nov!! #dazzle4rare

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

FibroFlutters logo
FibroFlutters 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

Glitter Queens Global logo
Glitter Queens Global logo

Glitter Queens Global

Glitter Queens Global is a nonprofit advocating through philanthropy. Learn more about what they do – #dazzle4rare

GYNCSM Community


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

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:

Metabolic Support UK logo
Metabolic Support UK logo

This week Metabolic Support UK is partaking in #dazzle4rare to help raise awareness of rare conditions, like Inherited Metabolic Disorders. You can learn more about IMDs and what Metabolic Support UK do via the website

One Rare logo

One Rare’s mission: improve experiences for young adults with rare disease through education, mentoring and peer support. One Rare’s inaugural event, ‘One Rare Experience’ launched in 2020, and this year’s event is in August. Reach out to learn more about 2021 and 2022! #dazzle4rare

PIP Support UK
PIP UK – Poland Syndrome Support & Network

PIP-UK is dedicated to providing a network of support and raising awareness for Poland Syndrome. This syndrome affects the hands & chest. It’s so rare that its frequently undiagnosed until late in life. We are proud to #Dazzle4Rare in 2021!

Pitt Hopkins UK logo
Pitt Hopkins UK logo

Pitt Hopkins UK raises awareness of Pitt-Hopkins syndrome among health professionals, supports families of both adults and children with PTHS while delivering up-to-date information and supporting research into the breathing anomalies and dysfunctional autonomic nervous system. #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

Rare Disease Ghana Initiative logo
Rare Disease Ghana Initiative logo

Rare Disease Ghana Initiative

Living with undiagnosed, genetic, & rare diseases in most areas of Africa is confronted with negative socio cultural beliefs. Rare Disease Ghana Initiative is helping to break the silence in Ghana. We #Dazzle4Rare Find out more at

Rare Funding Team

Rare patients face significant barriers requiring professional advice getting them to their goals. The popularity of digital platforms requires skill sets not all NPOs have. Through our partner we offer pro bono consulting to help orgs be successful. We gladly #dazzle4rare

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

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!

Bridge the Gap SYNGAP Foundation logo
Bridge the Gap SYNGAP
Education and Research Foundation logo

Ok. Let’s #DAZZLE4RARE “21 for 21” Action = Impact that Sparkles all over the world for SYNGAP1! #dazzle4rare #syngap1 #syngap

Stronger Than Sarcoidosis
Stronger Than Sarcoidosis logo

Celebrating our #STRONGERversary is the perfect time to #dazzle4rare!

We’re highlighting #SarcoidosisWarriors & #RareDisease orgs, ensuring that all #sarcoidosis patients know they are not alone. Together we are #StrongerThanSarcoidosis.

Businesses & Brands

Find Your Rare lifestyle brand
RARE. Brand
Find Your Rare on socials

Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. #dazzle4rare

Stripe2Be logo
Stripe2be logo

When looking closely at our #DNA strands we see our unique 𝘀𝘁𝗿𝗶𝗽𝗲𝘀: just like those of a zebra. Having knowledge of our DNA stripes empowers us to make positive, productive decisions re our health & wellbeing. We are delighted to be working with @dazzle4rare again in 2021!

Advocates & Allies

Judith Flanagan
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!

Male Lupus Warrior
Male Lupus Warrior

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

Click to go directly to #Dazzle4Rare on social media

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