Rare Disease Connect

Raising awareness for rare diseases #Stiffpersonsyndrome patient Living to be the healthiest I can be while keeping a good spirit, attitude and loving others ❤️

[dazzle4rare @dazzle4rare]

@colormystripes The lovely @chronicallysass is the Human who runs the FB page. She has been a #Dazzle4Rare OG & absolute awesome person!

[Rare Disease Connect @chronicallysass]

@addiengeorge @dazzle4rare @AAlliance_SAID @SOSHDdUHB @ncbrsfoundation @rarepatientvoic @iPainOfficial @IFAiArthritis @FibroFlutters @Ataxia_and_Me @KIF1A @RareDiseaseDad I would be interested if I could be audio only.

[Rare Disease Connect @chronicallysass]

Do you remember when you joined Twitter? I do! #MyTwitterAnniversary

[Patient Worthy @PatientWorthy]

Family Raises Zellweger Syndrome Awareness https://t.co/Ydwv5wo66d #RareDisease #ZellwegerSyndrome #PatientStories @camraredisease

[Rare Disease Connect @chronicallysass]

Anxiety and depression, the unwanted accomplice to #raredisease and #chronicillness some days they take over and all I can do is try to sleep them away

[SeqComplete @SeqComplete]

#RareDisease @iPainOfficial: '#Dazzle4Rare - is a cross-community of support for undiagnosed & rare disease awareness. Unlike most awareness events, this week is meant to enable #raredisease communities of all sizes to …, see more https://t.co/8JJSArJY7K

[dazzle4rare @dazzle4rare]

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

[NCBRS Worldwide Foundation - Nicolaides Baraitser @ncbrsfoundation]

@RareBeacon

🧡💚💙 #Dazzle4Rare #WeAreRareFamily #NCBRS #NCBRSRare @Dazzle4Rare

[dazzle4rare @dazzle4rare]

Thank you to these beautiful faces. When you share my message about #RareDisease I reach your family & friends. When I share yours, I do the same. So, what do YOU want others to know about your NPO, advocacy, or personal experience during #Dazzle4Rare

[StiffPersonSyndome @amyholmanturner]

The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias. #Dazzle4Rare

[ANE International @aneinternationa]

This is why we #Dazzle4Rare.
Destan's family bravely share their son's battle with #Covid19 associated #AcuteNecrotizingEncephalopathy
"...it was like everything just went away... all the happiness, all the innocence... "
https://t.co/kVFCCuikor
@dazzle4rare
#ANEawareness

[NCBRS Worldwide Foundation - Nicolaides Baraitser @ncbrsfoundation]

Today we are sharing about other organisations, advocates and more as part of #Dazzle4Rare2022...

Make sure to follow our posts to learn more... 🧡💚💙
#Dazzle4Rare #WeAreRareFamily #NCBRS #NCBRSRare @dazzle4rare

[Judy-The United Advocate @unitedadvocacy]

#Dazzle4Rare

[Rare Disease Connect @chronicallysass]

@melissarvh My condolences for your loss 😔

[Beacon for Rare Diseases @RareBeacon]

#PatientGroups provide the emotional support after a #RareDiagnosis

They provide the understanding & medical info needed to make informed decisions about one’s health

Without patient groups, rare patients and their families would be left overwhelmed, isolated and misunderstood.

[Rare Disease Connect @chronicallysass]

Ugh 😔headlines like this give me serious Ick. There has to be a better way to bring attention to #RareDisease without further ostracizing an already underrepresented community #dazzle4rare #stiffpersonsyndrome

[Gillian Sapia RN @GillianHSapia]

I hate articles that label #raredisease as “weird” or “strange” we aren’t a freak show. I hate this language because there is real person behind each dx #medicalminority #pavethewayfda

[Ataxia-and-me CIO 1184030 @Ataxia_and_Me]

today on #Dazzle4Rare its the 10th of August ... Ataxia is rare. #Friedreich’s #ataxia, which is the most common type of hereditary ataxia, affects approximately 1 in every 50,000 people.
#kNOwATAXIA our #animations at
https://t.co/ettiRxVuJv (by @SondraB_RareQoL

[dazzle4rare @dazzle4rare]

Want 2 make a difference 4 the #Gastroparesis community? Join us on FB https://t.co/CTQIUeJOdm or see https://t.co/DQV7qmGfTJ #Dazzle4Rare

[Flutters and Strutters (Formerly FibroFlutters) @FibroFlutters]

#MentalHealth affects us all in different ways when living day to day with #rarediseases & #chronicillness. It doesn't matter whether you are male or female ➡ talking to others & knowing you are among people that also have #anxiety can really help. #Health #Dazzle4Rare

[Rare Disease Connect @chronicallysass]

… but they never go away quite so easily and never for long. Being able to relate to others in the rare disease community makes having #stiffpersonsyndrome a little more tolerable…

[Rare Disease Connect @chronicallysass]

Anxiety and depression, the unwanted accomplice to #raredisease and #chronicillness some days they take over and all I can do is try to sleep them away

[Flutters and Strutters (Formerly FibroFlutters) @FibroFlutters]

#MentalHealth affects us all in different ways when living day to day with #rarediseases & #chronicillness. It doesn't matter whether you are male or female ➡ talking to others & knowing you are among people that also have #anxiety can really help. #Health #Dazzle4Rare