Sarita Edwards
@SaritaEdwards
Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
ID:318600298
http://linktr.ee/ewefoundation 16-06-2011 18:58:22
4,1K Tweets
1,0K Followers
811 Following
Effie Parks
@OnceUponAGene
Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 ๐ฆ
Taylor Kane
@rarelikeher
Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Becky Sansbury
@AftrTheShock
Emotional Support Specialist | Rare Disease | Palliative Care | Author of 'After the Shock' | former hospice chaplain | always a mom
Global Genes
@GlobalGenes
Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Adam Johnson - DadVocate
@RareDiseaseDad
Dad w/#RareDisease | #Mito Advocate |๐Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | โพ๏ธ @Cubs ๐@49ers
Minority Genetic Professionals Network
@minoritygenetic
We are a space for racially & ethnically diverse professionals & students in genetics to connect & support increased access to services in minority communities.
Amy Gaviglio
@agavig
Founder, Connetics Consulting | Genetic Counselor | Public Health Genetics/Rare Disease Consultant. Lover of challenging discourse. Tweets are mine.
Beacon for Rare Diseases
@RareBeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
EveryLife Foundation
@EveryLifeOrg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Abby Turnwald (she/her)
@PedsGCAbby
Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, letโs talk about sibling health
Ethan Perlstein
@eperlste
ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, solo vc @AngelList, evo pharmacologist, mTOR worshipper, HODLer since '14, cofounder of Kai & Luca, bio/acc
RARE Revolution Magazine
@RareRevolutionM
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Marni Cartelli
@Purrfectly_Rare
Rare Disease Patient, mom, & advocate. Danny's Dose Alliance Board Member. Know who you are & live a way you can be proud of.
Natasha B.
@Nat_Bonhomme
Putting families at the center of health- Founder @ExpectHealthOrg - Dir. @BabysFirstTest_ #maternalhealth #BlackInGenetics Travel and Patio time ๐๐พ ๐ญ๐น
Devin Shuman (she/her)
@DevinShuman
A genetic counselor with #MitochondrialDisease. @SmithCollege Alum, #mitoGC #disabledGC #GeneChat #AbortionIsHealthcare #RareDisease opinions are my own๐ณ๏ธโ๐
The E.WE Foundation
@EveryoneIsWe
Healthcare advocacy organization for families affected by #EdwardsSyndrome or #Trisomy18, other #rarediseases, and #specialhealthneeds.
SynGAP Research Fund (SRF)
@cureSYNGAP1
#SYNGAP1 ๐งฌ = ๐ง NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6๏ธโฃ.1๏ธโฃ/๐ฏk ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 ๐
Patient Worthy
@PatientWorthy
We're a resource for engaging, informative content and rare patient news, well done.
Expecting Health
@ExpectHealthOrg
Expecting Health was founded by a group of women with a simple idea: families deserve and should expect more โ more support, more guidance, better health.
Neena Nizar
@NeenaNizar
Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own
Joanne
@kopplin_joanne1
Elon
@Elonrevvemusk1
CEO OF X CEO OF TESLA CARS CEO OF SOLAR AND ELECTRIC CARS CEO OF TESLA INVESTMENT
๐บ๐๐๐๐๐ ๐ผ๐๐๐
@kim_bal_10
Entrepreneur, Chet, Philanthropist | board @tesla| Founder @ TheKitchen @ BigGreen NovaSkyStories Order my cookbook!DA
Ryan Hodgson
@Ryanintheus
Letโs do life better! CEO of @rysing_tide ~ Coaching | Strategy | Operations โข ๐ฆ๐บ in ๐บ๐ธ โข Alcohol-Free โข Melanoma Survivor โข Host: @ArmourSessions
Maj Mel Mann, Ret., MBA, M.Ed, Patient Advocate๐๏ธ
@MelDMann
WORLDโS LONGEST LIVING GLEEVEC & Tyrosine Kinase Inhibitor TKI Survivor, 29 Yr #CML Survivor, Army Ret, CONNECT IF YOUโRE CONNECTED TO CANCER OR CLINICAL TRIALS
Alessandra Akai Tsubomi Rossi ๐Life on the needle
@SaekoRossi
Anime and manga lover โฅ๏ธ I have APS.. June Is APS Awarness month๐ Spread awarness or ask to me about antiphosho.. What ๐งฌ๐๐๐ฉธ
Martina
@Martina87553263
News freak seeking the truth!
eduar narvaez monsalve
@eduarnarvaezmo1
Elon musk Parody
@parody721
CEO OF TESLA X CEO OF TESLA CARS CEO OF SOLAR AND ELECTRIC CARS CEO OF TESLA INVESTMENT AND STOCKS
LeBron Fans ๐
@LeBronJames
LeBron James news. #TeamLeBron #Strive4Greatness.๐ @KingJames. ๐
DNA Today: A Genetics Podcast
@DNATodayPodcast
Best Science & Medicine #Podcast Award Winner ๐งฌ โข #GeneticCounselor @KiraDineen Interviews #Genetic Experts โข #DNA #Scicomm #GeneChat
Shanon Bramblette
@Shanon0920
?She/Her Bisexual & Bi-romantic TBI, DV, & GSW survivor in recovery. Single mom of 3 kids & 2 fur babies. Spoonie โฟ๏ธโฎ๏ธโฏ๏ธโ๏ธ BLM Keto Low-carb Pro-Love Pro-Equal
Focus On Sickle Cell Africa
@UgandaSickle
FOSCA exists to provide a multi-faceted approach to combating SCD that includes testing, research, raising awareness, and providing psychosocial support.
Simply Kristy
@SimplyKristyD
Wife. Mother of 3 awesome kids. Founder of Chronically Simple (@cshealthapp). #EDS Warrior. Advocate for patient empowerment. Lover of coffee.
Susan Wright
@SusanWrigh13174
RareDiseaseDiversityCoaltion
@rarediseasediv1
MyPurplePatch ๐
@Patch1Purple
Jeffrey Davis
@JeffreyLDavis44
Health Policy Director @mcdermottplus. Husband, father of two, Duke basketball super fan. Opinions are my own.
Caryn de Nocker
@CarynDe56338
Life Science Network
@lifesciencenet
A platform for life sciences. Publications, research protocols, news, events, jobs and more. Sign up at https://t.co/xfb4I8iNYS.
Noor Siddiqui
@noor_siddiqui_
Helping everyone have a healthy baby @OrchidInc Prev Stanford CS, AI Lab, @thielfellowship
VltBlt_58
@Vltblt536888
Paula Saffie Awad
@PaulaSaffieA
Passionate Chilean MD treating rare diseases /PhD candidate / GP2 trainee representative for LATAM
MD Carpenter
@MDCarpenter1331
First generation Black scientist using gene-editing technologies to address health equity | Penn Phd | CHOP PD | ๐ณ๏ธโ๐
CDH International
@cdhintl
The world's oldest, largest & leading Congenital Diaphragmatic Hernia charity. @cdhiuk @canadacdh @CdhiSingapore @CdhiHongKong @cdhiswitzerland @CdhiNl
๐ท๐ทู ุฑุงู ุจูุช ุฎุงูุฏ ๐บ
@NMnayk87665
ููุง ุฃุฌุงู ู ุจุฃุญุงุณูุณู ููุง ุฃูุจู ูู ุงูููู ุฅุญุณุงู ููู ุตุฏูู ูุฎุณูุฑูู .. ุชุดุฑููู ุฎุณุงุฑุงุชู .. โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ โ 
Felicia Kate Solomon
@myfacialpain
Head and Neck Patient seeking a Diagnosis and Medical Treatment for Benign Disease. Writer and Blogger QueenJ
@QueenJRE42522
Angela Ramirez Holmes
@ramirezholmes
Team Andrew, Elected director @ Zone 7 Water, political consultant, wife, mama, Athletics fan, Raider Nation, Founder/President Cal Rare
Prerna Goja
@PrernaGoja
Chief Executive Officer of @Zensa_LLC | Board Member at #WECAN | Woman-In-Tech | D.E.I. | Go-To-Market Strategist | Cloud, IT, and Accessibility Solutions.
Sherry Brown
@SherryBrow49484
Brain Ablaze
@BrainAblaze
As people with Epilepsy, we raise awareness for Epilepsy and support anyone having seizures. | The Brain Ablaze Epilepsy Podcast | Blog | Support
Tytina Sanders-Bey
@Thatmskizzy
#parent CLC~Doula #socialjusticeadvocate #birthworker #chronicallyill since 2019 #nutcrackersyndrome #pelviccongestionsyndrome fighting to get my health back
Oxford-Harrington Rare Disease Centre
@OHRareDisease
Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
suzanne ludlum
@ludlumsuzanne
Angelica
@angelica46deaso
The Childrenโs Rare Disorders Fund
@thecrdfund
Dedicated to curing rare genetic disorders
Erica Torres
@EricaTorre40496
jeremy
@beerisgood87
#Ravens #Orioles #Bulls sports=life
Tina Scott
@TinaScott526591
Jerry Williams
@jerryw1976
Founder/Former President #Myositis Support & Understanding (MSU). Respect honesty & giving to others. #RareDisease. Opinions are my own. #LGBTQ ๐ณ๏ธโ๐๐ฎ๐ฑ
Bill Brown
@eyes_of_ibad
Elementary Teacher - Father of 5 - #EdTech #Office365 #Schoology #OneNote (He/Him) Well, it's 50 cups of coffee and you know it's on
Barbie for Congress (FL-11)
@BarbieHardnHall
Democratic candidate for U.S. Congress, Florida District 11 Wife, mother, Rare Disease Advocate, MLD mom It's time to give FL-11 its voice back.
Zareh โZโ Zurabyan
@ZBiotechGuy
๐ฅท ๐คซ Founder Stealth Mode Biotech SaaS๐งฌ๐จโ๐#AI in #Biopharma @Harvard & @MIT ๐ฆพHead of @eLabNext @eppendorfgroup ๐
Sheyenne Walmsley
@ShyWalmsley
Genetic Counseling ๐งฌ | MGH Institute of Health Professions โ21 | Boston University โ17 | She/Her/Hers | Opinions are my own.
Carman Deda Lake
@Momof3DLakes
DSMomof3 606 NATIVE GulfVet HM3, RMA Humanitarian Mission Focused cPTSD,MST,Trauma&multi-Cancer Survivor w/rare CACNA1A Gene Mut Parent,Pt&Advocate, Influencer
Ellen Nastase
@enastase
Andy
@AndyBayo_
Chronic Fatigue. Orthostatic Hypotension. Heat Intolerance. Impaired Cognition. Possible CCI. Possible brainstem compression. #mecfs #mespine #severeme
KG satou
@KGcaptain
ๆฏๆฅใใใใฃใใใฆใพใใ