Expecting Health @ExpectHealthOrg
Expecting Health was founded by a group of women with a simple idea: families deserve and should expect more – more support, more guidance, better health. linktr.ee/expectinghealth Washington, DC Joined June 2016-
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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
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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
This month, we hosted a webinar that focused on the challenges the #BlackCommunity faces while navigating the #raredisease space and the healthcare system. Click this link to watch that recording now: bit.ly/4bIavkB #rarediseaseday #Links2Equity #TravereTherapeutics
Expecting Health retweeted
RSV is the leading cause of hospitalization for babies under age 1. Protect your baby from unnecessary risks: ➡ Sanitize surfaces ➡ Wash hands often ➡ Wash toys regularly ➡ Avoid large crowds Learn more about how to prevent #RSV ▶ bit.ly/3nBpxk6
Expecting Health retweeted
About 80% of Black women will have uterine fibroids by the age of 50. Black women tend to develop #fibroids at a younger age, have larger fibroids, and have fewer days between periods.
Expecting Health retweeted
The recording for our webinar, where we shared the results of our #familyleadership Survey, is now available! Click the link to learn what #familyleaders had to say about their journeys and the responsibilities that come with the role: bit.ly/3I4uhci #familyengagement
Expecting Health retweeted
New to advocacy? Don't worry! You don’t need to be an expert or an extravert to be an advocate. We'll have a live training for all advocates in preparation for our Advocacy Day! Register today! hubs.la/Q02lGn_B0 #maternalMentalHealth #maternalhealth #healthcareproviders
Expecting Health retweeted
#BMHW24 is on the way! A week packed with enlightening discussions, dynamic events, and meaningful connections aimed at advancing the well-being of Black Mamas and Birthing People. #BlackMaternalHealthWeek #ReproductiveJustice #BirthJustice #BirthEquity #BMHW2024
15 minutes until our webinar begins! Still need to register? Click here: bit.ly/4blrs4j #raredisease #healthequity #Blackcommunity
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
To truly meet the needs of communities, we must actively engage and respect key stakeholders from those communities at every stage of the process. Check out these tips on how you and your organization can do just that! @WSUMedicine #healthjustice #healthequity
The last day of the Health Justice and Belonging Conference is underway, and we look forward to today's sessions! @WSUMedicine #HealthJustice #HealthEquity
Stephanie Courtney, founder of the Shades of Motherhood Network, shares with us the Black Birthing Bill of Rights and speaks on the importance of Black women understanding their rights during pregnancy and childbirth. #healthjustice
The 2024 Health Justice and Belonging Conference has just begun! Excited to attend thought-provoking sessions and hear from all the distinguished speakers. @WSUMedicine #healthjustice #healthequity
Mark your calendars so you don't miss out on our upcoming webinar! Still need to register? You can do that here: bit.ly/4blrs4j #healthequity #BlackHistoryMonth #Blackcommunity #raredisease
Expecting Health retweeted
#OvarianCancer is the fifth leading cause of death among women. This #WorldCancerDay, check out the SWHR ovarian #cancer fact sheet to learn your ovarian health risks and understand your cancer screening options: ow.ly/cSZf50Qxo5k #SWHRtalksCancer
Expecting Health retweeted
#BreastCancer is the 2nd leading cause of death among women. A woman's risk of developing breast cancer in her life is 1 in 8. This #WorldCancerDay, check out this fact sheet to learn your breast health risks & cancer screening options: swhr.org/swhr_resource/… #SWHRtalksCancer
Expecting Health retweeted
Happy Black History Month! Each week, we will honor an ancestral midwife like Mary Francis Hill Coley, who delivered over 3,000 babies and was featured in the film "All my Babies," a midwifery training video. Join us in March for #NBMA2024Conference ! bit.ly/NBMA2024Confer….
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
Expecting Health retweeted
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
Amy Gaviglio @agavig
389 Followers 316 Following Founder, Connetics Consulting | Genetic Counselor | Public Health Genetics/Rare Disease Consultant. Lover of challenging discourse. Tweets are mine.
Aishwarya Arjunan, MS... @aishuarjun
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Minority Genetic Prof... @minoritygenetic
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Natasha B. @Nat_Bonhomme
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Sarita Edwards @SaritaEdwards
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Baby's First Test @BabysFirstTest_
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Effie Parks @OnceUponAGene
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Liz Mizerik, MS, CGC @lizmizerik
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WSRGN @WSGSC
319 Followers 547 Following The Western States Regional Genetics Network works to increase access to genetic services and education for medically underserved populations.
The E.WE Foundation @EveryoneIsWe
272 Followers 218 Following Healthcare advocacy organization for families affected by #EdwardsSyndrome or #Trisomy18, other #rarediseases, and #specialhealthneeds.
National WIC Associat... @NatWICAssoc
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Natasha B, MS, MPH,CG... @nkrberman
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Nisha K. Cooch PhD @NishaKCooch
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Looms4Lupus @Looms4Lupus
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धापा\हॉ�... @RAMs60326917
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CYSHCNet - Pediatric ... @CyshcNetwork
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CACNA1A Foundation @cacna1a
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Betsy Pilon @BetsyPilon
903 Followers 1K Following You can find me less often here, and most often 🦋🦋🦋 under the same name.
SarcasticFundraiser @SarcasticFund
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Lettercase @lettercaseorg
337 Followers 333 Following Lettercase is a medical outreach program under the University of Kentucky's Human Development Institute.
Tricia Hall @BiochemG_thall
165 Followers 1K Following Biochemical Geneticist, newborn screening enthusiast, hockey fan, Gryffindor, avid reader, cat butler
Ruthanne Sheller @Ruthanne_APHL
55 Followers 127 Following Senior Specialist, NewSTEPs, Association of Public Health Laboratories
Amanda Pichini @AmandaPichini
1K Followers 875 Following Clinical Director @GenomicsEngland 🧬Genetic counsellor 🧬 proud Canadian 🍁 loves a good food market 🧺 own views
Unconditional Love In... @Uncondi81938022
83 Followers 80 Following Free Rapid #HIV and Hep-C testing. HIV primary, specialty care, and case management. Hepatitis-C treatment. STD/STI screening and treatment. #PrEP #PEP
Eliza Lo Chin, MD, MP... @ElizaChinMD
1K Followers 1K Following Executive Director @AMWADoctors, Master @ACPInternists, Editor-This Side of Doctoring: Reflections from Women in Medicine, med humanities. Tweets my own.
Rare-X @RareX_2024
110 Followers 331 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
Urea Cycle Disorders ... @UCDConsortium
195 Followers 76 Following The UCDC is dedicated to improving the lives of individuals affected by urea cycle disorders. An international collaboration, part of NIH RDCRN @rarediseasesnet
ThinkGenetic Foundati... @ThinkGeneticFdn
66 Followers 127 Following A Non-Profit 501(c)3 Charity Helping to Educate and Empower Those Living with Genetic Conditions #raredisease #genetics
Amy Gaviglio @agavig
389 Followers 316 Following Founder, Connetics Consulting | Genetic Counselor | Public Health Genetics/Rare Disease Consultant. Lover of challenging discourse. Tweets are mine.
Aishwarya Arjunan, MS... @aishuarjun
3K Followers 2K Following Genetic Counselor🧬 in CHI via PITT. MSL at GRAIL, Past @GeneticCouns Board Member & past @CWRUalumni Board Prez #H2P Gryffindor⚡ #BurghProud Tweets are my own
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.
Genetic Counselors @GeneticCouns
15K Followers 593 Following National Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. RT does not equal endorsement.
Natasha B. @Nat_Bonhomme
852 Followers 2K Following Putting families at the center of health- Founder @ExpectHealthOrg - Dir. @BabysFirstTest_ #maternalhealth #BlackInGenetics Travel and Patio time 🙌🏾 🇭🇹
Sarita Edwards @SaritaEdwards
1K Followers 802 Following Rare Mom (#Trisomy 18) | Doctoral candidate | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth
National Coordinating... @NCCRCG
998 Followers 916 Following Join us for the 5th Annual Public Health Genetics and Genomics Week from May 20-24. #PHGW #PublicHealthGenetics #PublicHealthGenomics Retweet/likes≠endorsement
Baby's First Test @BabysFirstTest_
163 Followers 266 Following Baby's First Test is the nation's newborn screening education resource center for families and health professionals.
ReproductiveHealthImp... @rhimpact__
8K Followers 2K Following Creating a world where Black communities can achieve our full potential for reproductive health, wellbeing, safety, and joy.
Effie Parks @OnceUponAGene
6K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
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.
Genetics Policy Hub @GeneticsPolicy
204 Followers 142 Following Latest US genetics policy information. Information posted is for educational purposes only. Posts/follows/reposts/likes≠endorsement. Run by @nccrcg.
WSRGN @WSGSC
319 Followers 547 Following The Western States Regional Genetics Network works to increase access to genetic services and education for medically underserved populations.
The E.WE Foundation @EveryoneIsWe
272 Followers 218 Following Healthcare advocacy organization for families affected by #EdwardsSyndrome or #Trisomy18, other #rarediseases, and #specialhealthneeds.
MomsRising @MomsRising
63K Followers 18K Following A movement of 1M+ people rising for all families to thrive. All content from MomsRising Together 501c4 social welfare org unless otherwise stated.
March of Dimes @MarchofDimes
60K Followers 3K Following March of Dimes leads the fight for the health of all moms and babies.
U.S. Breastfeeding Co... @USbreastfeeding
10K Followers 657 Following A national nonprofit coalition driving collaborative efforts for policy/practices that create a landscape of breastfeeding support. Retweets ≠ Endorsements
Minority Health @MinorityHealth
80K Followers 996 Following Official X account for the HHS Office of Minority Health (OMH). X posts/tweets before 01/20/25 were created by previous administrations.
HRSA @HRSAgov
41K Followers 212 Following The official government account of the Health Resources and Services Administration, an agency of @HHSgov. Authentication: https://t.co/abEVq8MjRu
CDC Division of Repro... @CDC_DRH
7K Followers 140 Following CDC source for reproductive, maternal, and infant health information. Following/being followed/RT ≠ endorsement. Privacy/comment policy: https://t.co/WpDk5Su805
NASEM Health @NASEM_Health
67K Followers 157 Following We help leaders in government and the private sector make evidence-based decisions on health policy and practice.
RareDiseaseDiversityC... @rarediseasediv1
184 Followers 42 Following
PTEN Foundation US @PTENFoundation
1K Followers 947 Following PTEN is a tumor suppressor gene. When mutated at birth a patient is at higher risk for many #cancers and #autism. our mission: treatments for PHTS, patient 1st
Accessia Health @AccessiaHealth
2K Followers 2K Following Accessia Health is a leader in nonprofit #patientassistance for people with rare and chronic health conditions. We speak health and human.
Maternal Mental Healt... @MMHLA2
2K Followers 1K Following Nonpartisan nonprofit org. improving maternal mental health in the U.S. by advocating for policies, building partnerships & curating information.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
NOAACF @noaacf
115 Followers 30 Following The mission of the National Organization of African Americans with Cystic Fibrosis is to engage, educate & raise CF awareness in the African American community.
National Academies @theNASEM
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Nicole Deggins @SistaMidwife
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Irth @IrthApp
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Rare Disease Day @rarediseaseday
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Black Maternal Health... @BMHCaucus
10K Followers 355 Following Congressional Caucus established by @RepUnderwood and @RepAdams to elevate the Black maternal health crisis and advance policy solutions to save lives.
AAMC Center for Healt... @AAMCjustice
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Indian Health Service @IHSgov
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HHS Civil Rights @HHSOCR
5K Followers 113 Following The HHS Office for Civil Rights (OCR) protects your rights against discrimination and ensures that your health information is private, secure, and accessible.
Health Disparities @NIMHD
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NIH Women's Health @NIH_ORWH
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CMSGov @CMSGov
206K Followers 114 Following Official X account for the Centers for Medicare & Medicaid Services (CMS) | Follow @DrOzCMS
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NMQF @NMQF
126K Followers 1K Following Aligning data with biological laws to drive action — National Minority Quality Forum is the largest health equity engine since 1998. Learn more: https://t.co/V86SlJBjT8
NCHAM @InfantHearing
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Marti Health @MartiHealth
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Institute for Healthc... @TheIHI
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IJNS MDPI @IJNS_MDPI
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Baebies @baebiesinc
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cathysmythPhD @cathysmyth
76 Followers 82 Following advocate for babies and families everywhere. Director of Research at Anchor Center for Blind Children. Doing the best I can.
Health Comm Society @healthcommsoc
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Aaron Goldenberg @ajgoldenberg
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ICoNS @ICoNSeqOrg
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Adam Johnson - DadVoc... @RareDiseaseDad
1K Followers 983 Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
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
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
National MCH Workforc... @MCHWDC
222 Followers 374 Following Collaborative learning, coaching, and consultation in implementing health transformation for Title V agencies and partners.
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Amy Curry Sturm @AmyCurrySturm
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LDNBSActionNetwork @LDNBSAction
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