Tweets Analysis - Keyword: @RareDiseases
Overview
Total number of tweets analysed
192
Earliest tweet was on
2023-02-10
Latest tweet was on
2023-02-21
Tweets covering
10 days
Average age of authors' accounts
8 years
Summarization
This collection of tweets involves advocating for raising awareness and celebrating Rare Disease Day on February 28th by posting videos, wearing green on February 16th, and participating in various events such as those involving the Roya Kabuki Initiative and a Rare Disease Diversity Survey in support of the Rare Disease Coalition, National Organization for Rare Diseases, EveryLife Foundation, and Global Genes. People are also sharing personal stories and experiences, expressing commitment to developing treatments, and encouraging people to get involved in policy.
Topic Modeling
- Rare Diseases
- Rare Disease Awareness
- Immune Dysregulation
- Disability Awareness
- Health Equity
Emotional Analysis
The tweets in this collection express a range of emotions, from hope and excitement to determination and commitment. The authors are focused on raising awareness for rare diseases and disabilities, and are eager to share their stories and experiences. They are grateful for the support of the medical and research communities, and for the organizations that are working to provide resources and treatments for those affected by rare diseases. There is also a sense of optimism, as the authors are confident that with continued advocacy and support, treatments and cures can be found.
Trend Analysis
- Rare disease awareness
- Diagnostic odyssey
- Immune dysregulation
- Disability awareness
- Raising awareness for those affected by rare diseases
Types of Tweets
Number of Retweets
65
Percentage of total tweets
33%
Number of Original tweets
74
Percentage of total tweets
38%
Number of tweets that contain Mentions
192
Percentage of total tweets
100%
Number of tweets that were Replies
45
Percentage of total tweets
23%
Number of tweets that were Quotes
11
Percentage of total tweets
5%
Number of tweets that contain Hashtags
130
Percentage of total tweets
67%
Top 5 devices used to tweet
| Source | Count |
|---|---|
| Twitter Web App | 82 |
| Twitter for iPhone | 50 |
| Twitter for Android | 23 |
| Hootsuite Inc. | 8 |
| Sprout Social | 5 |
What devices were used to tweet
Top 10 accounts with highest followers count
| Username | Name | Bio | Followers count |
|---|---|---|---|
| rarediseaseday | Rare Disease Day | 28 February 2023 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay | 42,033 |
| alsassociation | The ALS Association | The ALS Association National Office / Fighting ALS on every front through research, care services, and advocacy. Community guidelines: https://t.co/Af1fOXXTLG | 33,567 |
| ChildrensPgh | UPMC Children's Hospital of Pittsburgh | The official twitter feed of UPMC Children's Hospital of Pittsburgh, one of the nation's leading pediatric hospitals. Follow for news/info. | 32,928 |
| RoxanaDaneshjou | Roxana Daneshjou MD/PhD | @StanfordMed dermatologist working on AI/ML & precision health | @Rice_BioE alum | @pdsoros Fellow 2014 | Mastadon: @roxanadaneshjou@mastodon.social | 18,772 |
| Olas_Truth | Ola Ojewumi | ♿️ Disability lifestyle expert, writer, founder @projectascend heart/kidney transplant & cancer survivor. All views are my own. Email: assistant@olaojewumi.com | 16,163 |
| kaluapiscis | Reme | cambiar el chip...sin salud el resto sobra !!! | 14,344 |
| Linda_ADAO | Linda_ADAO | Mesothelioma widow dedicated to preventing asbestos diseases through education advocacy & community action. HuffPost Blogger TEDx Speaker https://t.co/6I7qawfzJZ | 12,077 |
| alsadvocacy | ALS Advocacy | ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous. | 11,626 |
| fastercures | FasterCures, a Center of the Milken Institute | FasterCures, a center of @MilkenInstitute, is working to build a system that is effective, efficient, & driven by a clear vision: patient needs above all else. | 8,951 |
| casanova_lab | Casanova Lab | We're a research lab at Rockefeller University (NY) and Necker Hospital (Paris) studying human genetic and immunological determinants of infectious diseases. | 8,558 |
Top 10 accounts with highest friends count
| Username | Name | Bio | Followers count |
|---|---|---|---|
| kaluapiscis | Reme | cambiar el chip...sin salud el resto sobra !!! | 13,795 |
| Linda_ADAO | Linda_ADAO | Mesothelioma widow dedicated to preventing asbestos diseases through education advocacy & community action. HuffPost Blogger TEDx Speaker https://t.co/6I7qawfzJZ | 13,105 |
| usnehal | Umbereen S. Nehal, MD, MPH | MIT Sloan fellow, coach, fmr Chief Med Officer & Medicaid med dir, Top Voice 4x, data nerd, digital health, MedEd, humanist, Tweets personal, RT🚫endorsement | 6,557 |
| MindfulDrG | Dr. Melissa Geraghty, Psy.D. (She/Her/Dr)🦓🦒🦄😷♿ | 💢 Medical Gaslighting Sensitivity Trainer 💢 CEO of Phoenix Rising with Dr. G 💢 Keynote Speaker 💢#IamRare 💢 #EatingDisorders #ChronicPain #ComplexMedical | 6,019 |
| RarePOV | Stephanie Fischer | #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own. | 5,812 |
| EPICLongIsland | EPIC LI | We provide services for individuals with intellectual/developmental disabilities, epilepsy & mental health challenges. We are Extraordinary People in Care! | 5,330 |
| glamama | Loretta Glama | passionate ab family, health, humanity, sun, sand'n'surf, clean water/food, natural hair, twitter activism, world weather & news, God & green earth | 5,001 |
| sbram94 | Sarah Bram | cerebral palsy 👩🦼 • @pennwedinboro ’16 🎓 • #slp2b 🦻🧏♀️🤟🏻• jewish ✡️ • @canineorg 💙💛🐕🦺 • broadway addict 🎭🎶 | 4,996 |
| RoxanaDaneshjou | Roxana Daneshjou MD/PhD | @StanfordMed dermatologist working on AI/ML & precision health | @Rice_BioE alum | @pdsoros Fellow 2014 | Mastadon: @roxanadaneshjou@mastodon.social | 4,696 |
| AryasGranny | aryas granny | 1 angry mammabear w/ nothing to lose, that will not allow my 'dil' to have any peace for the rest of my time here on earth, nor into the next life. andrea HEARD | 4,500 |
Most active users
| Username | Bio | Number of tweets |
|---|---|---|
| PheoPara | Investing in research and supporting #pheochromocytoma and #paraganglioma patients globally. "Stronger United" #NETCancer #RareDisease #pheo #para | 6 |
| rarediseaseday | 28 February 2023 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay | 5 |
| EngageHealthInc | Engage Health is an experienced health research firm serving the pharmaceutical, biotechnology and medical device sectors. | 5 |
| kempharm | We are a specialty pharmaceutical company discovering and developing new prodrugs designed to be improved versions of widely prescribed, approved drugs. | 5 |
| HsiehElena | I am a Chinese-Hispanic pediatric immunologist. I enjoy climbing mountains and lifting weights, literally and figuratively.@CUAMCImmuno_micro | 5 |
| flute4god | Making Good Trouble!Each One Reach One❤️Smile More🙂🙂🙂 | 4 |
| FDAPatientinfo | The FDA's Patient Affairs office covers a range of FDA-specific topics and conducts numerous activities that are of interest to patients. | 4 |
| MoebiusSyndrome | We are the Home for the Moebius community. Moebius syndrome is a rare neurological condition causing facial paralysis. Follow to learn more about our cause! | 3 |
| chrisduane819 | My daughter-She's gorgeous, defiant, graceful, determined, loved, outstanding nurse for others & doesn't' deserve this-Follow us, donate, RT, .@caseyscuremd | 3 |
| corgisrule2003 | - | 3 |
Tweets per day
Top 10 tweets with highest Retweet count
| ID | Text | Retweet count |
|---|---|---|
| 1624382242188570624 | Next up for our videos for #RareDiseaseMonth: spotlight on Dravet syndrome by Dr. Scott Perry, @TheNotoriousEEG. Join us in raising awareness! @RareDiseases @curedravet @cookchildrens https://t.co/wv8CGWdkaZ | 11 |
| 1626644862014525454 | Since 2008, #RareDiseaseDay has highlighted the global community that comes together to raise awareness for those affected by #rarediseases, including #ALS and #WolframSyndrome. We look forward to celebrating on February 28 with our friends at @RareDiseases. https://t.co/WfJRvqQ7n3 | 7 |
| 1624754158686404609 | Finally ready to share. #raredisease #rarediseaseawareness #ICareAboutRare As many of you know, our family has been on a diagnostic odyssey for the underlying cause of our 9yo's developmental delay & #Disability. @NIH @NICHD_NIH @UDNconnect @RareDiseases @M4RareDiseases | 7 |
| 1624205425649369089 | Please wear green on Feb 16 and take a pic and tag me and @curecc in honor of World Cholangiocarcinoma Day!! @ThanksCancer @CancerisanASS @MSK_DeptOfMed @CancerCare @ConquerCancerFd @CureCholangio @RareDiseases @CCA_Alliance @cure_today @RueschCenter @Coping_Cancer | 7 |
| 1625510211346653185 | New to the Alport community? Join a free virtual event open to Alport patients & family members on Feb. 16. A 60-minute open discussion, covering questions & concerns, while giving you a chance to meet others. https://t.co/OEszvyWiac @AlportSyndFndn @EveryLifeOrg @RareDiseases https://t.co/afKwnuYxPo | 3 |
| 1626059858876178436 | Take the National Organization for Rare Disorders, Inc. (NORD) Rare Disease Diversity Coalition @RareDiseases survey of underrepresented rare disease patients and caregivers. Take the survey: https://t.co/bFEJZX43dp https://t.co/F9rvRX0GMv | 3 |
| 1625907850139799552 | Thank you to @sfsimplified for sharing about the importance of #RareDiseaseDay and month! Spreading awareness is key! #RareDiseaseDay2023 #RareDiseaseAwareness #RareDisease @rarediseaseday @GlobalGenes @RareDiseases @SanfordResearch #CareAboutRare https://t.co/dQdEU9bZvX | 3 |
| 1624812823363883011 | @PMOIndia @SoodFoundation @BeingSalmanKhan @curesmaindia @RareDiseases @Khalsa_Aid @fundraising @NGOwalaAnand @imVkohli @HelpHumanityWi1 @TwitterParents @Teslafound @YUVSTRONG12 @RishabhPant17 @ShubmanGill @imjadeja @narendramodi @smritiirani @MoHFW_INDIA @aiims_newdelhi @iamsrk @BhuviOfficial @ArtofLiving @yuzi_chahal @CharityNav | 2 |
| 1627742810328924161 | Only 8 more days until #RareDiseaseDay! We are deeply committed to getting new treatments into the hands of people living with a rare condition. Join us and #ShowYourStripes. @RareDiseases @rarediseaseday https://t.co/0v2RrhRPJP | 2 |
| 1625178150496878611 | Mark your calendars! #RareDiseaseDay is right around the corner & we’re proud to sponsor NORD’s (@RareDiseases) work to help improve the health, well-being & public awareness of the over 25 million Americans with a #RareDisease. Learn how to get involved: https://t.co/UFbq5g2ny2 https://t.co/C4XcmE5lRs | 2 |
Top 10 tweets with highest Like count
| ID | Text | Like count |
|---|---|---|
| 1624754158686404609 | Finally ready to share. #raredisease #rarediseaseawareness #ICareAboutRare As many of you know, our family has been on a diagnostic odyssey for the underlying cause of our 9yo's developmental delay & #Disability. @NIH @NICHD_NIH @UDNconnect @RareDiseases @M4RareDiseases | 45 |
| 1624453393828966402 | Funded to work on immune dysregulation in nephrotic syndrome (MCD and FSGS) with @carafuentes_g! #NEPTUNE (nephrotic syndrome study network) #theissueisinthetissue @RareDiseases @umichmedicine | 29 |
| 1624382242188570624 | Next up for our videos for #RareDiseaseMonth: spotlight on Dravet syndrome by Dr. Scott Perry, @TheNotoriousEEG. Join us in raising awareness! @RareDiseases @curedravet @cookchildrens https://t.co/wv8CGWdkaZ | 26 |
| 1624205425649369089 | Please wear green on Feb 16 and take a pic and tag me and @curecc in honor of World Cholangiocarcinoma Day!! @ThanksCancer @CancerisanASS @MSK_DeptOfMed @CancerCare @ConquerCancerFd @CureCholangio @RareDiseases @CCA_Alliance @cure_today @RueschCenter @Coping_Cancer | 16 |
| 1626644862014525454 | Since 2008, #RareDiseaseDay has highlighted the global community that comes together to raise awareness for those affected by #rarediseases, including #ALS and #WolframSyndrome. We look forward to celebrating on February 28 with our friends at @RareDiseases. https://t.co/WfJRvqQ7n3 | 11 |
| 1627742810328924161 | Only 8 more days until #RareDiseaseDay! We are deeply committed to getting new treatments into the hands of people living with a rare condition. Join us and #ShowYourStripes. @RareDiseases @rarediseaseday https://t.co/0v2RrhRPJP | 10 |
| 1626215280887353345 | It's February! Here is your Disability Awareness info from my bulletin board! Learn about Angelman's Syndrome and Rare Diseases! @MTPSpride @thorne_ms @mtpsparas #180WaysLionsLead @angelman @RareDiseases https://t.co/fKyxnpTUkz | 9 |
| 1625540438185721873 | #RareDiseaseDay is approaching! We join @RareDiseases, @eurordis, and more as we set to raise the bar in raising awareness for those living with serious medical conditions like #PTLD. We stand behind those advancing science to develop therapies for people with #rarediseases. https://t.co/VHvfF5CBWP | 9 |
| 1626262862309265418 | #RareDiseaseDay is right around the corner and KemPharm is proud to sponsor NORD’s work to help improve the health, well-being, and public awareness of the over 25 million Americans with a #RareDisease. https://t.co/NmiowTNAEB #ShowYourStripes #LightUpForRare @RareDiseases $KMPH https://t.co/QCbeaBU5iO | 5 |
| 1624156353533992960 | With over 300 million people living with a #RareDisease, raising awareness and generating change is essential. Get involved in Rare Disease Day- Feb 28, 2023! For more info, visit: https://t.co/hDYKiotlfv @rarediseaseday @RareDiseases @EveryLifeOrg #RareDisease #OneRareVoice https://t.co/tUF2tBZ9qM | 5 |
Top 3 Languages Used In Tweets
Top 10 Hashtags used
| Hashtag | Count |
|---|---|
| #rarediseaseday | 52 |
| #raredisease | 43 |
| #showyourstripes | 25 |
| #rarediseases | 14 |
| #lightupforrare | 10 |
| #rarediseaseday2023 | 7 |
| #rarediseaseawareness | 5 |
| #rarediseasediversitysurvey | 4 |
| #fda | 4 |
| #nord | 3 |
Top 10 Hashtags Used In Tweets
Top 10 mentions
| Mention | Count |
|---|---|
| @rarediseases | 187 |
| @rarediseaseday | 22 |
| @m4rarediseases | 13 |
| @everylifeorg | 11 |
| @fdapatientinfo | 11 |
| @nih | 11 |
| @carafuentes_g | 10 |
| @umichmedicine | 10 |
| @globalgenes | 9 |
| @eurordis | 9 |
Top 10 mentions
Wordcloud of Tweets
Emojis
Average number of emojis used per tweet
14
Emojis used in tweets
| Emoji | Count | Emoji Text |
|---|---|---|
| 👍 | 8 | thumbs_up |
| 👉 | 4 | backhand_index_pointing_right |
| 🙌 | 2 | raising_hands |
| 🗓️ | 2 | spiral_calendar |
| 🌎 | 2 | globe_showing_Americas |
| 5⃣ | 2 | keycap_5 |
| ❤️ | 2 | red_heart |
| ⛰️ | 1 | mountain |
| 👇 | 1 | backhand_index_pointing_down |
| 📅 | 1 | calendar |
Emojis groups
| Emoji Group | Count |
|---|---|
| People & Body | 15 |
| Objects | 3 |
| Travel & Places | 3 |
| Symbols | 3 |
| Smileys & Emotion | 3 |