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 Rare Disease Day 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

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 Jim Kelly Hunter's Hope 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, Natasha B., 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 American Academy of Pediatrics 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 RDI!

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.

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 !

NBDPN promotes healthy pregnancy behaviors that may reduce the risk of birth defects. Birth Defects Awareness Month is a time to raise awareness and highlight efforts to improve the health of people living with these conditions across their lifespan. #NBDAM

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 Women In Government

Sue Kendig (NPWH) is sharing how waving out-of-pocket costs helps to remove access barriers to preventive services, like vaccines and prenatal appointments.
Women In Government #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