The below Twitter-friendly messages are approved by each organization 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.
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
Message pending! Check back soon!
Bridge the Gap – Syngap Education & Research Foundation
501c3 Non-Profit Organization
Ok. Let’s #DAZZLE4RARE “21 for 21” Action = Impact that Sparkles all over the world for SYNGAP1! #dazzle4rare #syngap1 #syngap
Cambridge Rare Disease Network
@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 Pain Nerve Centre
We are intractable pain strong and we #dazzle4rare. Thriving, not merely surviving with rare conditions. Visit our website centralpainnervecenter.com.
We #dazzle4rare #strutourstripes for #EhlersDanlosSyndromes and support #dazzle4rare2020 #EDS #HypermobilitySpectrumDisorders
COMING SOON #watchthisspace for #ZebraStrutters at @FibroFlutters #RareDiseases #community
Gastroparesis: Fighting for Change
Want 2 make a difference 4 the #Gastroparesis community? Join us on FB https://goo.gl/pNnJmG or see http://curegp.org #Dazzle4Rare
Glitter Queens Global
Glitter Queens Global is a nonprofit advocating through philanthropy. Learn more about what they do – theglitterqueen.com. #dazzle4rare
#GYNCSM (Gynecological Cancers Social Media)Let’s #Dazzle4Rare – Learn about some of the rare gynecologic cancers https://gyncsm.blogspot.com/2020/09/september-9-2020-rare-ovarian-and-rare.html #gyncsm
Hashimoto’s Encephalopathy SREAT Alliance
In August, we #dazzle4rare. Join us! Raising #HEAwareness with our book on Amazon! You can find out book here – https://buff.ly/2hQxpzw. You can learn more by visiting our website https://buff.ly/2hv2Xe1
International Pain Foundation
International Pain Foundation is creating synergy through RARE through a special focus on helping those with rare diseases w chronic pain! This is why we support #dazzle4rare!
The IWSA is dedicated to individuals & families with WAGR syndrome. It’s our desire to celebrate the joy, love and courage of the 450 known WAGR patients worldwide. www.wagr.org #WagrSyndrome #IWSA #Dazzle4Rare
Love neuroscience and finding out about more about the human balance system? Love supporting researchers who strive to get treatments out of labs and into clinics? If so, you’ll love this: https://bit.ly/2ORTPRg #MdDSresearch
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
PTEN Hamartoma Tumor Syndrome
The PTEN Foundation was founded to find treatments or therapies for PTEN Syndromes. Until then, we will work to teach the world about PTEN; caring for our patients along the way. #dazzle4rare
Rare Disease Connection
Alone we are rare, together we can accomplish the impossible! This is why we #dazzle4Rare
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 www.rarediseaseghana.org.
#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 Nephrology here https://bit.ly/RARENephrology
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 rsds.org!
This week we’re 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 heB81570re: https://www.metabolicsupportuk.org/ #dazzle4rare
RareShare is a free social platform that connects rare disease patients, advocates, research organizations, and healthcare professionals. We serve hundreds of communities worldwide and are currently 8000 members strong. Find your community: https://rareshare.org/. #dazzle4rare
Advocates & Allies
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!