Helen W. Hernandez @Hg_Chemistry
Life-long learner. Founder of KAL Reseach Initiatives, LLC. Opinions here are my own. kalresearchinitiatives.com Houston, TX Joined May 2012-
Tweets567
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Getting ready for the @WellAwareWorld SHOWER STRIKE!!! Saving water and raising money for wells in East Africa. showerstrike.org/p/HelenWillSti… #ShowerStrike #GlobalWater #SoGirlsCanFocusOnRunningTheWorld
It was a great conversation @ClementYChow! Thank you for being an excellent partner as we push to find treatments for everyone suffering with this rare disease. @fam177a1 #rareepilepsy
It was a great conversation @ClementYChow! Thank you for being an excellent partner as we push to find treatments for everyone suffering with this rare disease. @fam177a1 #rareepilepsy
Happening tomorrow! Health Equity Community Workshop. Register at buff.ly/3v0rxKf
Today is Trisomy 18 Awareness Day! Today and every day, we remain committed to raising awareness about Trisomy 18 and supporting families affected by it. Together, we can contribute to creating better health outcomes for families with Trisomy 18. buff.ly/3IHhnRW
Recognizing the unique challenges that rare disease patients face and working to remove disparities is crucial to ensuring all individuals have equal access to healthcare. Tune in March 18, 1:00pm CST for our Health Equity Workshop premiere. Register at buff.ly/3v0rxKf
When life gives you dirt, make a garden!!
GO SARITA!!!!
Ten countries in the African Region🌍 have successfully eliminated an #NTD since 2021, with Guinea worm disease and yaws as our targets for eradication by 2030 🎯. The African Region is making strides in the fight against NTDs. #WorldNTDday
Today is World Neglected Tropical Diseases Day. Let's learn more about the diseases that affect 1 billion people worldwide bit.ly/491GCdv #NeglectedNoMore
Today is #WorldNTDDay! Medical research should be for all – not just diseases that can turn a profit. By #InnovatingTogether we can bring people affected by #NTDs out of the shadows and develop safer, simpler, more effective treatments. #UniteActEliminate
🌍 It's World Neglected Tropical Diseases Day! - Dengue and chikungunya🦟 - Leishmaniases 🪰 - Lymphatic filariasis (elephantiasis)🦟 - Noma😷 - Onchocerciasis (river blindness) 🪰 and other neglected tropical diseases affect over 650M people in the African Region annually.
There are 21 neglected tropical diseases. Find out what they are and what causes them #NeglectedNoMore
Request for startup: Is there a founder out there building — or who aspires to build — a clinical endpoints app for families who want to self-organize “n-of-few” observational studies and capture robust data justifying further development?
Want to see what a direct-to-patient biotech pipeline looks like? 22 programs funded by pioneer families, 12 in various stage of 1-to-N clinical studies, and half of hits are clinically actionable nutraceuticals. This is how you start to do drug repurposing at scale.
💛 I am sooooo excited!! Thank you everyone for AMAZING SUPPORT Call me/ Text me : 0775 868 668 /0629729878
💛 I am sooooo excited!! Thank you everyone for AMAZING SUPPORT Call me/ Text me : 0775 868 668 /0629729878 https://t.co/kU37OWdvyP
Thank you @BridgeBioPharma for this opportunity and for your dedication to the #RareDisease community. Go subscribe to OnRare and have a listen 💟💟
Thank you @BridgeBioPharma for this opportunity and for your dedication to the #RareDisease community. Go subscribe to OnRare and have a listen 💟💟
Join us for the January Webinar (SIDM) Community Event: Research into Practice Series. Register Here: ow.ly/OWz350QnXUH @KishaJezelAli @HardeepSinghMD
We are excited to announce the establishment of the Trisomy 18 Coalition, a global movement supporting families impacted by Trisomy 18. If you are an organization that provides Trisomy 18 resources and support, we invite you to join us! Learn more and join buff.ly/3RGaFku
I need to give context to this picture. The lady next to me is from Serbia and her child Zoya had a rare disease. Bojana advocated soo much for her child and those of others in her country that a law was passed by her government called "Zoya's law" #WODC
The @combined_brain Biorepository Roadshow stopped in Seattle yesterday! #collaboration for #raredisease at it’s best! @fam177a1 samples headed to @SomaLogic and @Metabolon for biomarker discovery!
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Ethan Perlstein @eperlste
17K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, solo vc @AngelList, evo pharmacologist, mTOR worshipper, HODLer since '14, cofounder of Kai & Luca, bio/acc
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Kuduishe Kisowile @Kudu_ze_Kudu
59K Followers 2K Following MD | Chairperson-SMAA | P1L1 | Health Communications Consultant #MeToo | #EczemaWarrior #KuduAfyaTips #DaktariMwandishi Left-handed. 🇹🇿 💜🤍💚 #RadFem
Tumaini MAKOLE @TumainiMakole
14K Followers 4K Following Pharmacist & Global Health Enthusiast | #TrustYourPharmacist | @capelexpharmacy
Sarita Edwards @SaritaEdwards
1K Followers 812 Following Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
ISACK Enock Nyaimaga @IsackNyaimaga
1K Followers 849 Following ▪️Climate Advocate ▪️ Public Health▪️Graphics designer▪️Comms 👨💻 @SAYoF_Climate ▪️CEO @izocompany ✊️ Passionate to save Mother Earth 🌎 ♻️ #SADCYouth
CACNA1A Foundation @cacna1a
2K Followers 2K Following Nonprofit dedicated to a brighter future for those with CACNA1A variants. On a mission to fund life changing research while supporting families along the way.
Yona Yangaza.(Mr #bea.. @yangaza209
2K Followers 2K Following NTDs Team Lead @onehealth_tz Previously Soc Media Manager of Africa @ISNTD_Press|SkinNTDs advocacy WG @WHO |National advisory of @tamelasataifa.Own Views
Jill Hawkins @fam177a1mamma
402 Followers 702 Following Founder and President, FAM177A1 Research Fund
Vivian J Joseph @vivian_j_joseph
24K Followers 1K Following 𝗚𝗟𝗢𝗕𝗔𝗟 𝗛𝗘𝗔𝗟𝗧𝗛 𝗬𝗢𝗨𝗧𝗛 𝗔𝗗𝗩𝗢𝗖𝗔𝗧𝗘 | 𝙃𝙚𝙖𝙙 𝙤𝙛 𝙃𝙚𝙖𝙡𝙩𝙝 𝘾𝙡𝙪𝙨𝙩𝙚𝙧 @SAYoF_Health | 𝗕𝘂𝗶𝗹𝗱𝗶𝗻𝗴 @Watoto_afrika @youthpowertz
Maximillian G. Kilipa.. @maxmillianway
1K Followers 76 Following Working W/ @SAYoF_Health to ensure solutions to challenges in global health reach the people who need the most. Outstanding Youth in Healthcare Advocacy Awardee
Peter Halliburton @phalliburton
3K Followers 2K Following Raising $$ for #SYNGAP1 gene therapy 🧬 // @cureSYNGAP1 501(c)(3) Board // Carter & Presley’s Dad // @lindsayhalli 💜 // @cyberark Channel
Vance Hobbs @HobbsVance54892
111 Followers 3K Following
ioyyucob4i61l6k @rkgbirpm2e1p
2 Followers 261 Following
Rais Latif @RaisLatif_Study
39 Followers 5K Following Hi I'm Rais. I'm mainly focussing on Math and Science lifelong. There is a lot to discover in these fields and my mind is always blown by all the cool things.
Innocent Grant @InnocentGrant
3K Followers 4K Following Clinician\Gender Equality Advocate\ Mandela Washington Fellow\ Phil Harvey SRHR Innovation Award Winner. can I help you?
Felicia Kate Solomon @myfacialpain
595 Followers 1K Following Head and Neck Patient seeking a Diagnosis and Medical Treatment for Benign Disease. Writer and Blogger
Matthew Horsnell @matthorsnell
2K Followers 3K Following Project Sleep’s Inaugural Sleep Advocacy Champion, Narcolepsy Renaissance Man, Pharma Consultant, Advocate-Author, WUN Group Facilitator, Actigraphy, Go Heels!
Teeshay @Teeshay478924
105 Followers 1K Following
Teninata @teninata20923
33 Followers 1K Following
Selena @toatheighs27773
271 Followers 5K Following See the world on the road, and get to know yourself on the way!
Ruby @ruby44smeltzer
199 Followers 3K Following
Neighneth @neighneth29656
13 Followers 2K Following “Working from the heart with passion is an art!”
Gaiety @Fithey358862
12 Followers 2K Following I hope that I will be mature and stable and survive the desperate situation and live a better life.
Shemeka @moore_shemeka17
257 Followers 3K Following
Phyllis @cesesly70179
258 Followers 5K Following See the world on the road, and get to know yourself on the way!
Joseph Mramba @official_mramba
1K Followers 968 Following Social Entrepreneur|Youth & Children Development Activist|Tanzanian 🇹🇿|founder @YIA_Tanzania | I Strive To Build Great Next Generation #FutureLeo #GodPower 💪
Victoria Janusz @VictoriaJanusz
45 Followers 413 Following Dueña/Emprendedora. Madre de una nina especial.
Yakobo Sabinus @SabinusYak37528
138 Followers 2K Following Be the change you want to see in the world.
RareDiseasesGreece @RareDiseasesGr
116 Followers 174 Following "#RareDiseases Greece" is the Greek RD Federation dedicated to improving the quality of life of all those affected by rare disorders | #ΣπάνιεςΠαθήσεις #Υγεία
Richard Matipani @RichardMatipani
360 Followers 4K Following
RUTFY MANARA @rutfymnr84
0 Followers 4 Following
Tarang Sharma @TShealthpolicy
705 Followers 2K Following @WHO #NMP #Covid19vaccines #HealthEvidenceNetwork #Cochranite #EVIPNetEurope #EHRN #NICE #healtheconomist #prioritysetting #healthresearch Views are personal
African Rare Diseases.. @ARDI_Africa
252 Followers 330 Following We are committed to advancing diagnostic and care for rare diseases in Africa and in the world through research and advocacy.
Stacia Glavas @staciaglavas
36 Followers 101 Following Trying to live out Christ's mandate to care for the poor, the widow and the orphan.
Todayisagift @Todayisagift802
480 Followers 5K Following Chronic Illness Warrior, #LongVax, Advocate for Patients Voice in care,Counselor & Reiki Pract, 💜Music, Concerts
Pangkong Fox @PangkongFox
145 Followers 231 Following Scientist turned educator turned stay-at-home mom turned scientist, educator, and rare disease advocate mom. Funny how life preps you for the unexpected.
team4travis @team4travis
352 Followers 601 Following No child should die from Isolated Congenital Asplenia 501(c)3 nonprofit corporation #team4travis #aspleniaresearch ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Rare Diseases & Disab.. @raddafoundation
1K Followers 4K Following Advocate and activist for Rare Diseases and Disabilities in Zimbabwe and Africa as a whole.
Yssa DeWoody @YssaDeWoody
281 Followers 493 Following christian, wife, parent, ring14 advocate, mathematician, runner, cook, adventurer. Cofounder of Ring14 USA and Ring14 International, but these views are my own.
Sofia Thomas @sofiathomas304
250 Followers 1K Following Managing Editor at Publishing Company #Nanotechnology #Nanoparticles #Nanomedicine #Medicalresearch
Brian Bomser @FLSpaceCadet
500 Followers 4K Following @NASAKennedy Mission Assurance Engineer, #Artemis Generation; Views are my own. NYC Born & Bred, making waves in FL. #GirlDad #LGM #JETS #LGR
Soudypaul’M @Soudypaul
3K Followers 3K Following Medicinal Chemist | Public Health Advocate | #AMR #NTDs #YOUTH | Global Health | Founder @NCAgency2024 | Health Economics | Edified to @ClubMwenge
Catherine Stratton, M.. @cathsmstratton
2K Followers 2K Following Epidemiology PhD(s) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafdn #KnowledgeTranslation #RareDisease #Pain #Disability
Pat Rullo @speakupradioh
8K Followers 7K Following Healthcare Author, Radio Host, rescued by 13 cats. Home to the Firebird Book Awards & Positive Change Podcast Awards. Creative services with a charitable twist.
Van Duesterberg PhD @vancanwin
767 Followers 2K Following Patient Scientist Discovering a Cure For My Blindness and Helping Others While I Am At It. Postdoc @UCSF. Follow my journey at https://t.co/LBDVJnzkTn
Julia Basak Halder @JoolesBH
343 Followers 1K Following not my king. not my genocidal prime minister either
femas membo @membo_femas
40 Followers 564 Following
👑Monica Francis @eastern___star
1K Followers 1K Following Researcher || @NM_AIST Alumni @SokoineU Alumni | BIOTECHNOLOGY | MOLECULAR BIOLOGY | GENOMICS |BIOINFORMATICS Isaiah 55: 8-9 🇹🇿
Gadiel Mghase @MghaseGadiel
603 Followers 2K Following | Facilities Management| Property Management| Real Estate Marketing|Valuation of Fixed Assets
David Coghlan @DrDaveCoghlan
1K Followers 2K Following Paediatrician.Father of 4.Leinster supporter. The second mouse gets the cheese.
Mkapa Faustine M @MkapaMadebele
345 Followers 339 Following | Supply Chain Management specialist|Pharmacist| #PublicHealthAdvocate|@MfamasiaP |CUHAS ALUMNUS|
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Ethan Perlstein @eperlste
17K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, solo vc @AngelList, evo pharmacologist, mTOR worshipper, HODLer since '14, cofounder of Kai & Luca, bio/acc
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Farhan Yusuf @faryus88
12K Followers 9K Following Global Health Professional. Young African Leader. Problem Solver. Alum - BYM 2015, YALI RLC EA, EALP 2018. YL4H Tanzania. YP-CDN. NextGen GHS. All views my own.
Kuduishe Kisowile @Kudu_ze_Kudu
59K Followers 2K Following MD | Chairperson-SMAA | P1L1 | Health Communications Consultant #MeToo | #EczemaWarrior #KuduAfyaTips #DaktariMwandishi Left-handed. 🇹🇿 💜🤍💚 #RadFem
Youth Combating NTDs @YouthCNTDs
2K Followers 554 Following We equip young advocates & leaders with resources that amplify their voices & influence in shaping policies that will end NTDs in their communities. #NTDFreeGen
Luke Rosen @lukebrosen
2K Followers 432 Following Dad of 2 amazing kids. Founder of https://t.co/M8dxuYqmgL. Works with families affected by rare neurological diseases and cancer. Baseball and hockey. Firefighter.
HEALTH CLUSTER @SAYoF_Health
1K Followers 99 Following We are @SAYoF_SADC Health Cluster working to ensure sustainable & effective Youth participation in tackling Health challenges affecting SADC region #SADCYouth
Tumaini MAKOLE @TumainiMakole
14K Followers 4K Following Pharmacist & Global Health Enthusiast | #TrustYourPharmacist | @capelexpharmacy
Southern Africa Youth.. @SAYoF_SADC
24K Followers 4K Following Southern Africa Youth Forum: a Regional Development Platform for Youth in SADC to contribute to more sustainable & effective youth participation #SADCYouth
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Tedros Adhanom Ghebre.. @DrTedros
2.0M Followers 2K Following Director-General of the World Health Organization. Retweets are not endorsements
World Health Organiza.. @WHO
12.3M Followers 2K Following We are the #UnitedNations’ health agency - #HealthForAll. ▶️ Always check our latest tweets on #COVID19 for updated advice/information.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Sarita Edwards @SaritaEdwards
1K Followers 812 Following Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
ISACK Enock Nyaimaga @IsackNyaimaga
1K Followers 849 Following ▪️Climate Advocate ▪️ Public Health▪️Graphics designer▪️Comms 👨💻 @SAYoF_Climate ▪️CEO @izocompany ✊️ Passionate to save Mother Earth 🌎 ♻️ #SADCYouth
Neena Nizar @NeenaNizar
2K Followers 2K Following Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own
Gabby Stern @gabbystern
26K Followers 8K Following @WHO Director of Communications. Ex-OWH, ex-WSJ, ex-BMGF. gabbystern60 on threads. Am no longer checking X DMs.
Peter Halliburton @phalliburton
3K Followers 2K Following Raising $$ for #SYNGAP1 gene therapy 🧬 // @cureSYNGAP1 501(c)(3) Board // Carter & Presley’s Dad // @lindsayhalli 💜 // @cyberark Channel
Dereck Joubert @dereckbeverly
10K Followers 1K Following Award-winning filmmakers. @NatGeoExplorers. Working to protect wildlife & the large predators that determine the course of conservation in Africa.
Sophia @sophiazilber
43 Followers 219 Following
Hans van Bokhoven @BokhovenHans
41 Followers 26 Following
Human Genetics Nijmeg.. @GeneticNijmegen
540 Followers 79 Following Radboudumc Nijmegen Genetica. Research, erfelijkheidsonderzoek, genoomdiagnostiek en onderwijs.
Child & Youth Care @ChildYouthCareZ
255 Followers 315 Following Supporting the interests of children living with rare medical diseases.# inherited bleeding disorders #health education # quality care# early diagnosis
Clement Chow @ClementYChow
17K Followers 5K Following henfluencer - geriatric millennial - #stopasianhate - don’t call me Clem - emotional eater™️- he/him- @chowlab
David Fajgenbaum, MD @DavidFajgenbaum
11K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF
Rare-X @RareX_2024
114 Followers 345 Following Rare-X 2024, Africa's leading conference on rare disease treatment and access, will be taking place at Indaba Hotel, Johannesburg from 14-17 February 2024
Actigen @Actigenltd
13 Followers 38 Following Delivering medicines that improve outcomes and quality of life for patients
Sydney Stelmaszek @SydneyStel
505 Followers 662 Following Supporting African leaders with @LifeChildAfrica to restore communities for generational change - Rare disease mom to Emmitt @cureSYNGAP1 - Wife to @UFDTech
Sandy Smith @sandysmith317
3K Followers 2K Following #RareDisease #SYNGAP1 auntie. Working for a cure with @cureSyngap1. Healthcare IT professional. Micah 6:8 💜#epilepsy💙#autism💚#id
Rare Diseases South A.. @rarediseasessa
5K Followers 5K Following We're bridging the gap to improved quality of life, for a better tomorrow, for the #1in15 South Africans affected by rare diseases.
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.
IRDiRC @irdirc
3K Followers 2K Following #IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Rare Diseases Clinica.. @rarediseasesnet
8K Followers 507 Following NIH-funded network fostering collaborative research among 20 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Innocent Grant @InnocentGrant
3K Followers 4K Following Clinician\Gender Equality Advocate\ Mandela Washington Fellow\ Phil Harvey SRHR Innovation Award Winner. can I help you?
Felicia Kate Solomon @myfacialpain
595 Followers 1K Following Head and Neck Patient seeking a Diagnosis and Medical Treatment for Benign Disease. Writer and Blogger
Matthew Horsnell @matthorsnell
2K Followers 3K Following Project Sleep’s Inaugural Sleep Advocacy Champion, Narcolepsy Renaissance Man, Pharma Consultant, Advocate-Author, WUN Group Facilitator, Actigraphy, Go Heels!
✨Neemoh⭐ @neemohmugane
2K Followers 1K Following
Ataxia and Me CIO 118.. @Ataxia_and_Me
4K Followers 3K Following #Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma
Joseph Mramba @official_mramba
1K Followers 968 Following Social Entrepreneur|Youth & Children Development Activist|Tanzanian 🇹🇿|founder @YIA_Tanzania | I Strive To Build Great Next Generation #FutureLeo #GodPower 💪
HCU Network America @HCUAmerica
696 Followers 983 Following The mission of HCU Network America is to help patients with #Homocystinuria and related disorders manage their disease and to find a cure. #HCUNetworkAmerica
Society to Improve Di.. @ImproveDX
7K Followers 967 Following Official Twitter account of the Society to Improve Diagnosis in Medicine (SIDM) - the only organization focused exclusively on reducing #dxerror in medicine.
Grameen America @GrameenAmerica
10K Followers 3K Following Small loans. Big impact. Investing over $4 billion in more than 190,000 low-income women entrepreneurs across the U.S.
ashton kutcher @aplusk
16.4M Followers 804 Following I build things, stories, companies, collaborations of thoughts, dreams, & believe in a future where we all have a right to pursue happiness. +1 (319) 519-0576
Branford Marsalis @bmarsalis
42K Followers 415 Following
Ben Bernanke @benbernanke
112K Followers 2 Following Author of The Courage to Act, now available in paperback: https://t.co/MAa3VQsC47. Former Fed Chair; Distinguished Fellow in Residence, @BrookingsInst.
Masters of Scale @mastersofscale
30K Followers 4K Following Iconic business leaders. Priceless advice.
Dalio Philanthropies @DalioDotOrg
13K Followers 108 Following As a family foundation, we focus on equal opportunities in education, microfinance, ocean exploration & conservation, technology access, and health & wellness.
Mark Cuban Cost Plus .. @costplusdrugs
134K Followers 32 Following Selling low-cost medications with radically transparent prices with support from @mcuban. No membership fees. No insurance required. Read before DM ⬇️
Ambassador Michael Ba.. @ambobattle
4K Followers 173 Following U.S. Ambassador to Tanzania, Retired U.S. Army Reserve Chaplain, Former President of ITC, Graduated Trinity College, Duke University, and Howard University
Courageous Parents @CourageousCPN
772 Followers 434 Following Courageous Parents Network is a non-profit organization that orients and empowers parents and others caring for children with serious illness. #Pedpc
LifeArc @lifearc1
7K Followers 3K Following Medical research non-profit transforming promising life science ideas into medical breakthroughs that change patients’ lives.
Segun Fatumo @SFatumo
4K Followers 940 Following Associate Professor, NCDE, LSHTM, United Kingdom. Associate Professor, MRC/UVRI and LSHTM Uganda. Genomics | GWAS | Africa | Capacity Building | Global Health
Prof Peter Hotez MD P.. @PeterHotez
452K Followers 8K Following Vaccine Scientist-Author-Combat Antiscience @bcmhouston Professor Pediatrics Molecular Virology, @bcm_tropmed Dean, @TexasChildrens Chair in Tropical Pediatrics
Wellcome Connecting S.. @eventsWCS
11K Followers 3K Following Part of @connectingsci and funded by @wellcometrust, we fund, develop and deliver events focused on biomedicine and the application of genomics in healthcare.
Ada Hamosh @AdaHamosh
70 Followers 51 Following
RUN @rareundiagnosed
2K Followers 4K Following RUN for those affected with rare/undiagnosed conditions: Raise awareness. Urge insurance companies to reimburse WGS. Network to find answers. #RareUndiagnosed
Conscious Leadership @ConsciousLG
5K Followers 2K Following We bring a radical new leadership conversation to the organizational world through coaching, consulting, forums, events, keynotes, and online resources.
Trudy Nyakambangwe @nyatrudy
70 Followers 69 Following Wife. Mother. Founder of @ChildYouthCareZ PhD Student Liberal Feminist!
Tarang Sharma @TShealthpolicy
705 Followers 2K Following @WHO #NMP #Covid19vaccines #HealthEvidenceNetwork #Cochranite #EVIPNetEurope #EHRN #NICE #healtheconomist #prioritysetting #healthresearch Views are personal
Dr Socé Fall - DrMed.. @SoceFallBirima
9K Followers 2K Following Physician - Infectious diseases epidemiologist - Global Health leader - Director WHO Global NTDs program - “ Everyday and Everywhere to serve the humanity »
Elmira Safarova @RarusHealth
4 Followers 1 Following
Here are all of our researchers who participated in Meeting of the Minds at our NY conference. Thank you!!!! #curehps #hpsawareness
RDI is advocating for World Health Assembly resolution on rare diseases in 2025. CYC will be attending the World Health Assembly 77 Rare Diseases international Side Event and we invite you all! Register here lnkd.in/daXsmdEZ @RareDiseasesint @RareDiseases @GlobalGenes
Apply for a new #FundingOpp by Aug. 13, 2024! The opportunity invites applications for the Rare Diseases Clinical Research Consortia (RDCRC), which aim to improve diagnosis & treatment for people with #RareDiseases: go.nih.gov/AnCUy6j @rarediseasesnet
Leadership 👇
#MyCovid19Story - Let’s learn from our past and build a safer more resilient future. #PandemicAccord #AreWeReady #GetItDone
#Lipodystrophy is a complex, multiple system rare disease that is commonly misdiagnosed. Please take 90 seconds to learn more 👇🏻. #WorldLipodystrophyDay! youtu.be/HwFDJG3s_Eg?si…
@fam177a1 @CureEpilepsy Huge news, congratulations to @fam177a1mamma and the team, this is a testament to your hard work and leadership. Great choice @CureEpilepsy, @fam177a1 is a high quality organization.
Our Sr. Mngr. Research Programs Communications, Mackenzie Abramson spoke on a “Ask the Patients” panel today and co-chaired the afternoon track at the Patients As Partners 2024! @ConferenceForum #PatientsasPartners #ClinicalResearch #CareAboutRare
Happening tomorrow! Health Equity Community Workshop. Register at buff.ly/3v0rxKf
Today is Trisomy 18 Awareness Day! Today and every day, we remain committed to raising awareness about Trisomy 18 and supporting families affected by it. Together, we can contribute to creating better health outcomes for families with Trisomy 18. buff.ly/3IHhnRW
Recognizing the unique challenges that rare disease patients face and working to remove disparities is crucial to ensuring all individuals have equal access to healthcare. Tune in March 18, 1:00pm CST for our Health Equity Workshop premiere. Register at buff.ly/3v0rxKf
On #RareDiseaseDay our Texome paper comes out! sciencedirect.com/science/articl…
I am thrilled to share that I will be attending the historic White House Rare Disease Forum today, February 28th, 5:30pm EST. While the White House extended limited invites to rare community leaders, you are encouraged to tune in online. Livestreamed at: buff.ly/3TfaZaz
We’re working with 30 pioneering and cure-focused groups. Find out how it all works here👇
Is your family/foundation a good fit for Perlara? Check out our FAQ page for answers to all your questions: perlara.com/faq
An amazing high-level side event at #AUSummit @_AfricanUnion with inspiring discussion on promoting sustainability through resource mobilisation and financially resourcing an Africa free of neglected tropical diseases. Together we can #BeatNTDs! 📸William Dekker @ALMA_2030
We’re delighted to see #RareX2024 taking place this week. From patients to policymakers, RareX unites the #raredisease community to advocate for improved treatment access and equity. We’re looking forward to hearing the insights coming out of the conference as it unfolds.
@vronnielolo I'm excited too ... Africa has soo much to give in this (#RareDisease) narrative! #RareX2024
Our co-founders @rokanja and @cmutena representing at the @rarediseasessa #RareX2024 conference in J'burg. We (as a founding member of Africa Rare Diseases Alliance #ARDA), are working towards a cohesive & vibrant community for PLWRDs on the continent. #RareDiseaseKE
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