Baby's First Test @BabysFirstTest_
Baby's First Test is the nation's newborn screening education resource center for families and health professionals. linktr.ee/babysfirsttest Joined July 2022-
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Embracing #rarediseaseDay today and every day because awareness is just the beginning. Our fight for #raredisease equity is a daily commitment, and together, we can make sure that no one feels alone on their journey. Visit @rarediseaseday to learn more! #showyourstripes
The rarest day of the year is finally here: it's #RareDiseaseDay! 🦓 Tag us in your posts today as you #ShowYourStripes and check out our website to add to our "Faces of Rare" dedication wall, download social media graphics, and more: bit.ly/2BrULms🦓
In celebration of #InternationalWomensDay, we are hosting a webinar during which our presenters will share insights on the importance of women being included in #healthresearch while exploring the impact of diversity in #advocacy efforts. Register here: bit.ly/4bVHuSr
Looking for even more #CHD resources? Visit our website (bit.ly/3Uwuw7w) to find information, resources, organizations, and more all dedicated to CHD. #newbornscreening
Looking for even more #CHD resources? Visit our website (bit.ly/3Uwuw7w) to find information, resources, organizations, and more all dedicated to CHD. #newbornscreening
Happening tomorrow - join us as we dive into the unique experience of being Black with a rare disease. We will provide insights, share stories, and offer practical tips we can all use to raise awareness and further our collective pursuit of #healthequity. bit.ly/4blrs4j
It’s #WorldCancerDay! 🌍 Each patient and caregiver, irrespective of age and type of rare cancer, share the same challenges linked to the rarity of the disease. Let's unite to call to improve rare cancer patients' timely access to adequate care and a better quality of life.
Join us on February 14th at 1:00 PM EST for a meaningful discussion about the unique challenges Black individuals face when navigating the #raredisease space. Discover ways we can collaborate to improve these experiences. Register here: bit.ly/4blrs4j #healthequity
This is a HUGE day for #krabbe and #leukodystrophy families! We’re going to make sure they add #MLD next! Huge work by @JimKelly1212 @HuntersHopeFDN and other Krabbe organizations and families.
This is a HUGE day for #krabbe and #leukodystrophy families! We’re going to make sure they add #MLD next! Huge work by @JimKelly1212 @HuntersHopeFDN and other Krabbe organizations and families.
The Advisory Committee on Heritable Disorders in Newborns and Children voted Tuesday, January 30, 2024 to add #Krabbe to the RUSP. This recommendation will now go to the Secretary of HHS for approval. #newbornscreening #NBS #genetics
This Friday, join us and our founder, @Nat_Bonhomme, to kick off the @NASEM_Health study, which will examine the current landscape of NBS systems, processes, and research in the US and considerations of sustainable adoption of screening for new conditions using new technologies.
This Friday, join us and our founder, @Nat_Bonhomme, to kick off the @NASEM_Health study, which will examine the current landscape of NBS systems, processes, and research in the US and considerations of sustainable adoption of screening for new conditions using new technologies.
The @AmerAcadPeds EHDI program is hosting a 4-part series of virtual office hours featuring real-time technical assistance on key #EHDI topics. Click here to learn more and register to attend: bit.ly/42hPgBR. #hearinglossawareness #hearinghealth #accessibilityforall
How has medical gaslighting influenced your #RareDisease journey? How do you feel we can address medical gaslighting - and transform the care landscape for the better?
It's #TakeoverTuesday with @rarediseasesint! With #RareDiseaseDay just 44 days away, join us in a quiz to test your knowledge. How did you fare? Did you score 5/5? Share your results in the comments! 👇 Visit our website & learn more: rarediseasesinternational.org
Many #rarediseases can be detected through #newbornscreening. Visit BabysFirstTest.org to learn more about the screening process, different rare diseases and conditions, and which diseases your state screens for.
Many #rarediseases can be detected through #newbornscreening. Visit BabysFirstTest.org to learn more about the screening process, different rare diseases and conditions, and which diseases your state screens for.
Join us this #RareDiseaseDay 🙌. You're part of a 300-million-strong community. Share your story, raise awareness, and remember: we are many, strong, and proud! 💪 rarediseaseday.org !
Happy Holidays from Expecting Health! #happyholidays #happynewyear #holidayseason
Julian Polaris (@manatt) is discussing ways that state programs can minimize barriers to quality healthcare, including working with managed care programs to waive prior authorizations required for prenatal vaccines. #RSV #maternalhealth #newbornhealth #MCH @WomenInGovt
Sue Kendig (@NPWH) is sharing how waving out-of-pocket costs helps to remove access barriers to preventive services, like vaccines and prenatal appointments. @WomenInGovt #RSV #maternalhealth #newbornhealth
Currently engaged in this webinar, learning about the new #RSV vaccine, which offers immediate protection to newborns against RSV right from birth. #prevention #publichealth
Currently engaged in this webinar, learning about the new #RSV vaccine, which offers immediate protection to newborns against RSV right from birth. #prevention #publichealth
ettaLondon @Zt24ua5zyaOf4AB
0 Followers 1K Following
EliteBiz Review @EliteBizReview
2K Followers 4K Following Providing trending news related to market, business and growth. Unveiling entrepreneurs success stories
Neshaw @Neshawalr
24 Followers 3K Following Don't remember other people's advice until you fail, and don't remember to cherish something until you lose it.
Dr. Ramprasad, Eedara @ramprasad_evv
343 Followers 5K Following Microbial taxonomy and phylogenomics
JMae, Surviving in wi... @mom_of_aaa
7K Followers 8K Following 🇺🇸Bright blue member of resistance living in a red state. Rock Chalk Jayhawk!! Reality tv is my guilty pleasure 🤫! #bluewave Retweet Queen 👸🏻 #DM’s=Block!
Stephen Monaco Golf @stephenmonagolf
39 Followers 182 Following The 6th Annual Stephen Monaco Charity Golf Event for Children’s National Hospital in DC is Friday, October 29, 2021. #childrensnational #golf #rarediseases
Jamie Mentgen @mentgen71484
72 Followers 5K Following
Citrin Foundation @citrinfdn
61 Followers 84 Following A research-driven, non-profit organization dedicating USD30m to tackle citrin deficiency over the next decade. We fund research and provide patient support.
Aneta Kaczmarczyk @ane_ka
0 Followers 22 Following
Kristy Jackson @Kristy_Jackson9
147 Followers 490 Following
Rosemary @carter18rosemar
1K Followers 3K Following
Barbie for Congress (... @Barbie4Congress
14K Followers 5K Following Democratic Nominee for US Congress 2024, FL-11 ✨The Villages to Disney World ✨ Rare Disease Advocate // MLD Mom
Elizabeth Reynolds @EReynolds_
211 Followers 541 Following Founder @TheChampFound | Fighting to cure Pearson syndrome | Research scientist @RTI_Intl interested in rare disease, newborn screening & child development
Tricia Hall @BiochemG_thall
165 Followers 1K Following Biochemical Geneticist, newborn screening enthusiast, hockey fan, Gryffindor, avid reader, cat butler
PASAGE Study @pasagestudy
9 Followers 47 Following Social scientists/bioethicists interested in hearing your thoughts on gene therapies🤓 Visit our website or email us for more info! https://t.co/VyBVx8lKxh
The Med13L Foundation @Med13L_Fdn
97 Followers 615 Following Supporting MED13L families through awareness, research, and community. Connecting hearts and minds to overcome challenges. #NDD #Epilepsy #Autism #ID 🧬💙🧠
Shannah Hudson @ShannahHudson
55 Followers 507 Following Child of God, Wife, Mom to SuperHero, Homeschool Teacher, Rare Disease Advocate, Founder of Mississippi Metabolics Foundation, Lover of Liberty
i Baby @ibaby_ibaby
75 Followers 348 Following All about Baby Care and Parenting. Make your Babies Healthy, Intelligent and Inquisitive.
Keri Lafferty @talktokeri
18 Followers 74 Following
Gyasi Junior @GyasiJunior7
15 Followers 164 Following
🇱🇻Agnese Vētra... @esengA_Agnese
146 Followers 584 Following
ExeterGenomes @ExeterGenomes
2K Followers 448 Following Latest news and updates from the exome and genome sequencing service at the Exeter Genomics Laboratory, Royal Devon University Healthcare NHS Foundation Trust
Eva Van Steijvoort @eva_vst
365 Followers 881 Following Postdoctoral Researcher @CBMER_KULeuven | PhD in #bioethics | Junior Deputy @EshreEthicsLaw Reproductive decision-making
Juan F. Cabello @jf_cabello
842 Followers 376 Following Neuropediatra, eterno alumno, docente U de Valparaiso y U de Chile, amigo de los buenos (creo).
ABC Law Centers (Reit... @abclawcenters
361 Followers 1K Following Birth trauma attorneys with a national presence. We exclusively handle birth injury, pregnancy, and newborn cases. Founded in 1997 by Jesse Reiter.
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]
Betsy Pilon @BetsyPilon
904 Followers 1K Following You can find me less often here, and most often 🦋🦋🦋 under the same name.
AdvocacyEve @AdvocacyEve
208 Followers 655 Following Driving empowerment of patients and families within the global #RareDisease community through advancing advocacy, awareness, and collaboration.
Matt Pelo @mattpelo
400 Followers 677 Following Founder @foregenomics, https://t.co/nBGeNlaZSJ. Genetic health screening designed for children.
Immune Deficiency Fou... @immunedeficienC
26K Followers 1K Following The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency.
Dr Meghan McGarry @DrMeghanMcGarry
994 Followers 1K Following @uw @seattlechildren Pediatric Pulmonary Doctor, Cystic Fibrosis & Health Equity Researcher, Mom of 2, Opinions are my own (she/her)
Remember The Girls @remember_girls
2K Followers 775 Following Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers
rareparenting @rareparenting
2K Followers 710 Following Mom-created resource for parents of children with #disabilities, #rarediseases and #specialneeds
AASPA @AASPASurgeryPA
3K Followers 3K Following The American Association of Surgical Physician Assistants is the Premier Professional Association for Surgical PAs, PA Students, and Pre-PAs all over the world
Tom Defay @defaytom
2 Followers 81 Following
Samantha Darwak @s_darwak
76 Followers 197 Following
Luca Bedetti 🇮🇹 @Luca35423889
1K Followers 2K Following MD, PhD. Primary Care Pediatrician with expertise in Neonatology. Interested in neuro development, respiratory and infectious diseases. Tweets are my own.
Quantabio @Quanta_bio
337 Followers 2K Following #Quanta_bio is a leader in PCR, qPCR, NGS and cDNA synthesis reagents that support applied, translation and life science research #PCR #NGS #lifescience
Robert C. Green @RobertCGreen
5K Followers 886 Following Physician, researcher, director of @Genomes2People, translating #genomics into improved health outcomes @BrighamWomens @HarvardMed Tweets are my own.
RareRising @RareRising_Org
177 Followers 524 Following RareRising, is a 501c3 that delivers research, incubates emerging rare disease entities, and explores solutions to positively impact rare disease communities.
Rare Disease Innovati... @rdii_org
459 Followers 207 Following RDII is a non-profit organization focused on education, engagement and to equip the rare disease community
PATH CT @PATHCT
814 Followers 2K Following PATH is a 501(c)3 nonprofit organization providing informational and emotional support to CT families of children with special needs
itzel chacón @chacochon
18 Followers 79 Following
ElkedB @b_elked
131 Followers 412 Following Clinical Genetics @Radboudumc | genetics and neurodevelopmental disorders | loves piano, panda bears, hoola hoop and nature
Mended Little Hearts @MLH_CHD
6K Followers 1K Following Mended Little Hearts empowers families impacted by congenital heart defects.
NCHAM @InfantHearing
313 Followers 97 Following Some children are born listeners, others need our help. We are here to provide help and support to children with hearing loss and to their families.
Screen4Care @Screen4Care
329 Followers 118 Following Accelerating Diagnosis for Rare Disease Patients Through Genetic Newborn Screening and Artificial Intelligence
International Society... @ISNSNeonatal
125 Followers 4 Following This society is aiming to advance screening for neonatal and infant sicknesses and disorders, worldwide.
Robert C. Green @RobertCGreen
5K Followers 886 Following Physician, researcher, director of @Genomes2People, translating #genomics into improved health outcomes @BrighamWomens @HarvardMed Tweets are my own.
Beth Steckler (she/he... @purplemamabear
6K Followers 6K Following Focused on improving healthcare for patients & caregivers & medical professionals. Patient advocate, patient engagement. Believes kindness CAN change the world.
Gillian Sapia RN @GillianHSapia
2K Followers 4K Following Rare Disease mom. Legislative Advocate and Activist. Opinions expressed are MY OWN and do not reflect the views of any organization, employer, or other entity.
Black Directors Healt... @BDHEA_
725 Followers 600 Following Directors from organizations committed to health equity, seeking long-term reductions in health disparities. #FierceUrgencyOfNow #BDHEA
Kuntal Sen, MD, FACMG @kuntal_sen_
988 Followers 1K Following Co-Director, Neurogenetics Clinic @ChildrensNatl 🇮🇳 🇺🇸 🏳️🌈 Asst Prof @GWSMHS. Media Editor @pedneurojournal Chair, Neurogenetics Section @AANmember
Meghan Halley @Meghan_Halley
569 Followers 628 Following Medical anthropologist, ELSI and bioethics researcher interested in rare and undiagnosed diseases. @StanfordBioethX @UDN_PEER. Views are my own.
Kinsey Anderson @TheKinseyA
4 Followers 9 Following Systems thinking, problem solving, creative, collaborative, super-nerd.
Texas Rare Alliance @txrare
455 Followers 604 Following TX Rare is dedicated to improving access and health outcomes for nearly 3 million Texas #raredisease patients through education and advocacy.
BHarrison @Barb_DNA_GC
652 Followers 245 Following Love Christ, family, and friends ❤🖤💚 Genetic Counselor 4 life! she/her/hers
#NOWINCLUDED @nowincluded
125 Followers 178 Following We are a community of individuals taking control of our health and future as we overcome health disparities one family at a time. Join us!
Scott Becker @scottjbecker
5K Followers 2K Following CEO @APHL, public health prof, husband, girldad, Wheaten owner, proud UMD graduate, Jersey Shore native, he/him. Views are my own! [email protected]
Birthing Justice @BirthingJustice
3K Followers 111 Following A collective of African-American, African, Caribbean and multi-racial women committed to transforming the birthing experiences for Black women.
WIN Network Detroit @WINNDetroit
774 Followers 823 Following Supporting Black moms, babies, and families & reducing infant mortality in #Detroit. Group prenatal care in partnership with @henryfordhealth
DC Health @_DCHealth
26K Followers 4K Following The DC Department of Health promotes health, wellness and equality across DC and protects the safety of residents, visitors and those doing business here.
NICU Parent Network @NICUParentNet
2K Followers 501 Following NPN is a collaborative of NICU Support Organizations led by NICU Parent Professionals. We're the only professional association for NICU Parent Leaders in the US
Preemie Parent Day @premieparentday
1K Followers 59 Following #Parents of #Preemies Day on MAY 3rd 2015 recognizes the courage it takes to stay strong when #premature #birth turns a family's world upside down.
preemiestoday @preemiestoday
2K Followers 73 Following Supporting families affected by prematurity starting at birth and throughout childhood.
blkwomenshealth @blkwomenshealth
33K Followers 5K Following We are the only national nonprofit dedicated solely to the health & wellness of Black women & girls. #BlkWomensHealth https://t.co/U9NLcnAQ4f
Every Woman CT @everywomanct
141 Followers 289 Following An initiative of the CT Maternal and Child Health Coalition to improve birth outcomes and the health of women and men throughout the course of their life.
The National Associat... @thenaabb
3K Followers 307 Following On a mission to combat structural #racism in maternal-infant health. Focused on #blackmaternalhealth, #maternaljustice and #advancingblackbirth.
INFANT Centre @infantcentre
4K Followers 1K Following A Maternal and Child Health Research Centre - hosted by @UCC and based @CUH_Cork.
Preemie Prints @PreemiePrints
579 Followers 133 Following Sharing hope with families who have a baby born prematurely or critically ill. NICU Family Photography | Handmade GIfts | NICU Family & Prayer Support
NIH Clinical Center @NIHClinicalCntr
82K Followers 174 Following Official account of the NIH Clinical Center Privacy policy: https://t.co/o5DDGA9BHU Comment policy: https://t.co/rmiekiNNVw Engagement ≠ endorsement
FL Perinatal Quality ... @TheFPQC
524 Followers 112 Following Florida Perinatal Quality Collaborative: Partnering to Improve Health Care Quality for Mothers and Babies
One Heart Worldwide @OneHeartWW
975 Followers 737 Following We work to save the lives and promote the well-being of 🤱🏽🤰🏾 and their newborns in underserved areas of rural Nepal 🇳🇵
Lisa Kane Low @kanelow
2K Followers 528 Following Prof Nursing, Women's & Gender Studies, OB/GYN, Univ of Mich Past Pres American College of Nurse Midwives #midwives, #HealthyBirth #maternalhealth #healthequity
Team EMC @RunTeamEMC
743 Followers 635 Following We run for @EveryMomCounts to raise the awareness & funds needed to get women closer to lifesaving maternal healthcare. Join us.
Mark W Leach @MarkWLeach
906 Followers 681 Following A father, lawyer, bioethicist & blogger commenting on prenatal testing for Down syndrome. And sometimes Johnny Cash, bourbon, current affairs, & the Steelers.
Brian Skotko @brianskotko
4K Followers 227 Following International expert on Down syndrome. Director @MGHDownSyndrome. Medical geneticist @mghfc. Enthusiast of https://t.co/vpU3CVatVr. Views my own.
Samantha Varner, MD @SamanthaVarner4
376 Followers 561 Following #OBGYN at the US-Mexico Border, warrior in the #WarOnWomen, climber, cat mom, political junkie, gardener, and coffee fiend! Opinions are my own!
University of Iowa He... @uihealthcare
14K Followers 649 Following The official account for University of Iowa Health Care. Our social media policy: https://t.co/cl9MuRHLFv
Washington State Depa... @WADeptHealth
59K Followers 1K Following Official X (Twitter) account for the Washington State Department of Health.
DrNari @NariHeshmati
1K Followers 1K Following #OBGYN, Medical Group Leader, health advocate, UF/FSU/Vandy alum #acog #wsma #medtwitter #SoMeDocs. Vids on https://t.co/7plxg
MoMMAs Voices @MommasVoices
1K Followers 270 Following First-ever #maternalhealth patient advocacy coalition of 40+ orgs. A program of @preeclampsia & home of the "Power of MoMMAs Voices" podcast! #UseYourMomVoice
First Focus Campaign ... @Campaign4Kids
30K Followers 21K Following First Focus Campaign for Children is a bipartisan child advocacy group dedicated to improving public policy for kids. Sister org @First_Focus. #InvestInKids
AJOGMFM @ajogmfm
7K Followers 19 Following AJOG MFM will be focused on the latest research in the specialty of maternal-fetal medicine, or high-risk pregnancy.
Minnesota PKU Foundat... @MNPKU
511 Followers 173 Following Providing resources and advocacy for people with Phenylketonuria in Minnesota.
WI Section, ACOG @ACOGWI
195 Followers 33 Following Wisconsin Section of the American College of Obstetricians and Gynecologists
Brittany D Chambers, ... @drbdchambers
1K Followers 425 Following Assistant Professor at UC Davis and Affiliated Faculty at UCSF focused on incorporating community voice to understand and dismantle racism
Lucja Grajkowska, PhD... @LucjaG_PhD
457 Followers 1K Following Medical Writer, #STEM, #MedEd, #RareDisease, Oncology, Immunology. Mom to a human child and 2 dogs; She/Her
Iowa Department of He... @IowaHHS
13K Followers 174 Following The Iowa Department of Health and Human Services works to protect and improve the health and resiliency of Iowans.
Alice Turner @birthtoolbox
5K Followers 2K Following doula, Lamaze Certified Childbirth Educator and creator of SupportingHer and Birth Tool Box. Weekly videos about childbirth https://t.co/1hlGOuJ61n
HATEISAVIRUS @hateisavirus_
3K Followers 50 Following #HATEISAVIRUS seeks to dismantle racism and other forms of hate. Join us by donating to our CommUNITY Action fund. Link below.Trends for United States
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