The Rare Disorder Podcast @RareDisorderPod
A podcast dedicated to raising awareness for rare diseases and disorders 5K+ active listeners, 1K+ followers, 35 ep. & growing | Host @ShivaniGVyas linktr.ee/theraredisorde… Joined July 2021-
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@RareNewEngland my favorites are @OnceUponAGene @SyngapNetwork and @myraredisease
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@PatientWorthy @RareNewEngland @McyrMph @NORDpodcast @OnceUponAGene @JordansGAngels @2DDPodcast Thank you!
Today marks the first day of rare disease month! Stay tuned for activities and fun things throughout the month! Shivani #theraredisorderpodcast #raredisorderpod #raredisease #rarediseases #rarediseaseawareness #rarediseaseday
Looking for a social media intern to help me out with the whole social media aspect of the podcast :) Apply via LinkedIn under The Rare Disorder Podcast. #theraredisorderpodcast #raredisorderpod #raredisease #rarediseases #rarediseaseday #internship #socialmediaintern
A quote from Saturday’s podcast…link in bio to stream! 🎙🦓 #theraredisorderpodcast #raredisorderpod #raredisease #rarediseases #rarediseaseawareness #rarediseaseday #donate
The Rare Disorder Podcast retweeted
As a 10 year hereditary colon cancer warrior here's my latest podcast guest appearance: open.spotify.com/episode/6WN9vU… Always Forge Ahead w/a Purpose!
New episode with @DryShockley Hear about rare disease advocacy from the point of view of a 10-year Hereditary Colon Cancer Warrior & Veteran. Such a great episode! #theraredisorderpodcast #raredisorderpod #raredisease #rarediseases #rarediseaseawareness #rarediseaseday #donate
Donations are now live for The Rare Disorder Podcast! Please consider donating, it’ll really help me out! #theraredisorderpodcast #raredisorderpod #raredisease #rarediseases #rarediseaseawareness #rarediseaseday #donate
Saturday = best day, because it’s The Rare Disorder Podcast upload day! Tomorrow at 2PM Eastern! Mark your calendars 📆. #theraredisorderpodcast #raredisorderpod #raredisease #rarediseases #rarediseaseawareness #rarediseaseday
The Rare Disorder Podcast retweeted
Meet our new #intern, Shivani Vyas! While Shivani may be new to the #CureRareDisease team, she is not new to the rare disease community. Read more about Shivani’s dedication to the #raredisease community in her new #blog post: cureraredisease.org/blog-posts/mee…
New episode will go up Saturday! 🦓💜🤍 #theraredisorderpodcast #raredisorderpod #raredisease #rarediseases #rarediseaseawareness #rarediseaseday
Hear from a registered RN nurse, with bedside experience! We talk about restoring the patient provider relationship, eliminating barriers to care, and delivering free programs and evidence-based resources to improve quality of life/care.
A quote that resonated with me from last Saturday’s podcast - take a listen if you haven’t already! 🦓💜🤍 #theraredisorderpodcast #raredisorderpod #raredisease #rarediseases #rarediseaseawareness #rarediseaseday
And all of these topics come with first-hand experience of Beth Nguyen, with extensive background and experience with rare disease patients, as well as her having a rare disease herself—-Syringomyelia! #theraredisorderpodcast #raredisorderpod #raredisease
NEW EPISODE LIVE! Link in bio to listen. This is the episode we have all been waiting for! 🦓🤍 I'm so honored to chat with Beth Nguyen. Beth is the Managing Director; Founding Partner, and President of Rare STRIDES. @RareStrides
With a very special guest. Stay tuned! 🎙 #theraredisorderpodcast #raredisorderpod #raredisease #rarediseases #rarediseaseawareness #rarediseaseday
Getting many requests lately about being on the pod - if you’re interested, please email me! 💌[email protected] #theraredisorderpodcast #raredisorderpod #raredisease #rarediseases #rarediseaseawareness #rarediseaseday
Raven Nelson @Josefa_Young
83 Followers 598 Following Luckiest Mother alive to 2 beautiful little girls that are my entire World. I battle with a rare disease called Syringomyelia, so I'm pushing thru 4them.
Christie J. Newport -... @christienewport
3K Followers 5K Following Author, rep’d Northbank Talent. Published by Joffe Books & Storm Books: The Raven’s Mark 'The most assured crime debut I have ever read.' Lisa Jewell ♥️
Canadian Rare Disease... @CanadianRDN
335 Followers 814 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
The Med13L Foundation @Med13L_Fdn
72 Followers 606 Following Supporting MED13L families through awareness, research, and community. Connecting hearts and minds to overcome challenges. #NDD #Epilepsy #Autism #ID 🧬💙🧠
Pyruvate Kinase Defic... @2021PKDF
68 Followers 70 Following The Pyruvate Kinase Deficiency Foundation is a national nonprofit organization whose mission is to enhance the quality of life for patients and their families.
VIslandMomma @VIslandMomma
7 Followers 292 Following
Ravaka Soumoudronga @RSoumoudronga
1 Followers 46 Following
Carly @CarlyO58
1 Followers 105 Following
The KCNC1 Foundation @KCNC1foundation
395 Followers 1K Following Supporting research to find a cure for all those impacted by KCNC1-related disorders. 501(c)(3) Operating under The Rare Village as our fiscal sponsor.
Sarah Tompkins 🦽�... @SarestBearest
2K Followers 4K Following EDS & Co, Rare Diseases, Patient & Disability Advocate, Wifey & Current Ms. Wheelchair Washington USA 2022 #PracticeSelfCareForYourHealthcare
maddie @urdisabilitygal
237 Followers 722 Following
HODA @HODAssoc
21 Followers 67 Following Hypertrophic Olivary Degeneration Association official Twitter account
CheckRare @CheckRare
3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
Terri Ellsworth @TerriEllsworth
2K Followers 2K Following Duchenne Advocate/Rare Disease Activist Mom, Designing Mom-Creating awareness & advocating for approval of safe & effective drugs. Words are always my own.
Aashiq Kachroo @Aashiq_Kachroo
952 Followers 1K Following Principal Scientist @PearlBio; Previously PI @Kachroo_Lab @SynBioCU, Ex-Canada Research Chair. Father of a daughter, black lab, Immigrant.
Arbor Biotechnologies @arbortx
548 Followers 471 Following Genetic medicines for #geneticdiseases. Follow/like/retweet≠endorsement
Norma Jean McDaniel @normajeanmcd
387 Followers 5K Following IRL Gen X desert chick. If I dig, I post. Enjoy biz, snark, interviews, wit, true crime, space. I test analytics here, too. Not a bot 😜. Just hangin' w u
Abbey Hauser @OwningMyStory
171 Followers 168 Following Rare Disease Advocate | Classical Ehlers-Danlos Syndrome | Adaptive Sports Enthusiast | Collector of Quotes | Occasional Superhero | she/they
Louise Cave She/Her @LouiseCave5
2K Followers 2K Following Transformation Manager | Florence Nightingale Digital Fellow 2022 | Clinical Academic | Alumni Digital Shared Professional Decision Making Council NHSE
Michelle @JePensePlus
162 Followers 922 Following An x-linked #biosimilarpatient. RD parent with many years lived experience. Expert, founder and CEO @AarskogSyndrome. My views are my own. #genomicresearch
Ben's Friends @bensfriends
4K Followers 2K Following #BensFriends is a network of #patientcommunities for people with #raredisease and #chronicillness. 501c3 Nonprofit: https://t.co/X2Pip2rsIz
Daniel @thetireddad1989
57 Followers 817 Following
Rarity Life @raritylifemag
231 Followers 812 Following A new online publication that offers those affected by rare disease, disability & cancer the opportunity to unify & share our collective experience.
Canadian Association ... @PorphyriaCanada
113 Followers 594 Following Providing information and support to Canadians with porphyria and their families since 2014.
Hb Group Chile @AdheraChile
426 Followers 2K Following Asuntos Publicos, Comunicaciones y Marketing Digital. Salud Digital
Minority Genetic Prof... @minoritygenetic
3K Followers 2K Following We are a space for racially & ethnically diverse professionals & students in genetics to connect & support increased access to services in minority communities.
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following Improving outcomes for those living with rare conditions. Also find us at: https://t.co/kZWskP9Ojj
Laura_TSF @Laura_TSF
93 Followers 395 Following #MOGAD Patient - Increasing awareness of #MOGAD & #NMO 💗 UK ambassador 💗⭐️sign our petition here⭐️➡️➡️ https://t.co/f9Fk5pPEQt
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Pro Bono Omics @ProBonoOmics
327 Followers 1K Following A journey to assist with rare disease challenges offering nil cost advice using computational modeling targeting personalized medicine for those in need.
フォートナイト... @LmDkLFaFp626Be2
3 Followers 89 Following
Danny's Dose @dannys_dose
502 Followers 2K Following Campaign to change Emergency Treatment Protocols in every state for over 32 million Americans requiring specialized care. (501C3)
Gillian Sapia RN @GillianHSapia
2K Followers 4K Following Ultra Rare Expert. Opinions expressed are MY OWN and do not reflect the views of any organization, employer, or other entity.
Paul Reading @PaulReading_
108 Followers 1K Following #VasculitisWarrior. I survived a near death experience. 8 years on, I'm still here. Changed but still here. #zebrawarrior #mastrplan .
Nancy Leib Kessler @nkessler0110
177 Followers 318 Following #raresister to Caren age 69 who has #Syngap1, volunteer patient advocate @curesyngap1 🧬🧠 working for a #cure for #rare #epilepsy #autism #ID
Simons Searchlight @s_searchlight
2K Followers 3K Following Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: https://t.co/kokQ7uLYWd
Jennifer Huron @JenniferHuron
334 Followers 1K Following Reader, writer, communications, strategy. Passionate about advocacy @rarediseases. Sports enthusiast. Forget cats, the internet was made for corgis.
Brenda Zwart @BandzBrenda
55 Followers 194 Following Daughter, wife, mom, nurse, grandma.....all in that order!
Haley DelPlato @HashtagHales
414 Followers 2K Following @colgateuniv '14 • Peel & Heal Studio • artsy entrepreneur • word nerd • #mentalhealth advocate • #spoonie • Dino nugget kinda adult.
Adam Johnson - DadVoc... @RareDiseaseDad
1K Followers 971 Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Erin Arcand @Mophatt1974
277 Followers 956 Following 47 year old, Mother of an amazing young man. Proud Winnipeger Proud Canadian Aka, Manitoba Prairie Fire.
alexandra hall @alix_hall
275 Followers 787 Following rare disease patient advocacy, health equity, accessibility... and other things (mostly poems and Mamma Mia references)
Dan Dry Dock Shockley @DryShockley
545 Followers 5K Following Retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran. I'm an 11 year hereditary colon cancer syndrome, attenuated FAP, WARRIOR.
Stephanie Ortoleva @Ortoleva_S
791 Followers 4K Following I'm an international #HumanRights speaker, consultant & lawyer focused on #WomensRights, #DisabilityRights and the rights of #women & #girls with #disabilities.
Cisiv_ @Cisiv_
95 Followers 1K Following Intelligent technology for late phase and real world research.
LifeArc @lifearc1
8K Followers 3K Following Self-funded medical research organisation with one clear purpose – transforming the lives of people living with rare diseases and drug-resistant infections.
Rare Diseases @CheckOrphan
18K Followers 5K Following CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs
Dan Dry Dock Shockley @DryShockley
545 Followers 5K Following Retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran. I'm an 11 year hereditary colon cancer syndrome, attenuated FAP, WARRIOR.
Rare STRIDES® @RareStrides
43 Followers 100 Following Rare STRIDES® is an innovative technology company focused on improving quality of life for patients. Our Mission: Connecting Care to Those with Rare.
Rare Disease Report @RareDR
15K Followers 1K Following Breaking news, patient stories & FDA updates within the rare disease community. Listen to our podcast: https://t.co/xUkFDfCDUV, hosted by @GiulianaGrossi
Rare In Common @RareInCommon
848 Followers 453 Following MANY VOICES. ONE MISSION. A user-generated short-film about the inspiring people in the rare disease community — Rare in Common.
Chan Zuckerberg Initi... @ChanZuckerberg
27K Followers 452 Following Supporting AI tools and resources to accelerate discoveries in science and transform learning at Biohub and Learning Commons.
Biorasi @Biorasi
545 Followers 845 Following Biorasi is a CRO widely recognized for delivering success in complex clinical trials worldwide.
RARE-X @RARE_X_
1K Followers 199 Following PATIENTS' DATA POWERING PROGRESS - RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. More to come.............
CheckRare @CheckRare
3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
Anna Laurent @lilannalaurent
495 Followers 389 Following she/her | Social Worker | Alagille Syndrome (ALGS) | Trauma-informed sarcasm | Advocate | Opinions are my own
Our Odyssey @_OurOdyssey_
927 Followers 475 Following Connecting young adults impacted by a rare or chronic condition with social and emotional support in hope of improving quality of life. #ourodyssey
SYNGAP1 Foundation @Syngap1Fnd
3K Followers 3K Following SYNGAP1 Foundation is a legacy page dedicated to preserving the work and mission of our 100% charitable nonprofit in the USA, focused on #SYNGAP1
David Ross @mensraredisease
712 Followers 827 Following MRDMH supports men’s mental health for those suffering with a rare disease. #raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
Rare Epilepsy Network @RareEpilepsy
2K Followers 604 Following Rare Epilepsy Network (REN) is working with urgency to collaboratively improve outcomes of rare epilepsy patients & families via research and advocacy.
MedicsforRareDisease @MedicsForRare
5K Followers 2K Following This account is no longer active, please continue to follow our work on Instagram and Bluesky! @medicsforrare
Remember The Girls @remember_girls
2K Followers 766 Following Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers
COMBINEDBrain @combined_brain
849 Followers 496 Following Consortium for Biomarkers and Outcome Measures for Neurodevelopmental Disorders https://t.co/4odslIFF84
Mike Graglia 🌻 @JMGraglia
7K Followers 2K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
CURE SYNGAP1 aka SynG... @cureSYNGAP1
11K Followers 1K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
SYNGAP1 Global Networ... @SyngapNetwork
3K Followers 2K Following Global #SYNGAP1 @cureSYNGAP1 🇺🇸🇬🇧🇪🇺 @Syngap1A 🇦🇷 @SyngapAus 🇦🇺 @OSyngap1 🇨🇦🇫🇷 @syngap1Germany 🇩🇪🇦🇹@syngap1italia 🇮🇹 & 🇪🇸🇮🇳🇯🇵🇸🇪🇨🇭
Erin Smith, MPH @JustErinToday
89 Followers 70 Following Rare disease patient advocacy & engagement Lover of dogs + hiking + food Always in service of Graham's legacy (b.3/17/14-d.8/2/14) Views are my own
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
MamaBearforRare @MamaBearforRare
629 Followers 1K Following @Mamabearforrare Just your average Mama making the world more inclusive by sharing stories about my child with Jordan’s Syndrome.
Rare Disease Day @rarediseaseday
42K Followers 3K Following 28 February 2027 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are impacted by rare diseases. #RareDiseaseDay
Cure Rare Disease @CureRareDisease
4K Followers 239 Following 501(c)(3) nonprofit leading a nationwide collaboration of researchers and clinicians in order to develop life-saving therapeutics for rare diseases.
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
DISORDER: The Rare Di... @DisorderRare
896 Followers 205 Following Two rare disease dads took their films for Menkes Disease and USP7 & built them into a festival for all films on rare disease. https://t.co/Qjsl21HRH4
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Patients Rising @patientsrising
6K Followers 3K Following Patients Rising was formed to provide the support, training, and tools #patients and caregivers need to access the treatment they deserve.
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
RDLA @RareAdvocates
6K Followers 2K Following A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
Effie Parks @OnceUponAGene
7K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓Trends for United States
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