Baby's First Test is the nation's newborn screening education resource center for families and health professionals.
Joined July 2022
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Baby's First Test retweeted
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
Baby's First Test retweeted
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🦓
ALT Blue background with text reading, "Today is Rare Disease Day. Show Your Stripes for the 1 in 10 Americans with a rare disease." with cartoon zebras and NORD and Rare Disease Day logos.
Baby's First Test retweeted
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
Baby's First Test retweeted
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
Baby's First Test retweeted
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.
ALT Purple background with text that reads: "Raise awareness for this World Cancer Day".
Baby's First Test retweeted
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
Baby's First Test retweeted
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
Baby's First Test retweeted
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.
Join us on Jan. 26 for a public information-gathering session from the Committee on #NewbornScreening: Current Landscape and Future Directions. Register to attend here: ow.ly/BLPN50QrwEk #HealthEquity #Bioethics
Baby's First Test retweeted
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?
Baby's First Test retweeted
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.or…
Baby's First Test retweeted
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 !
Baby's First Test retweeted
Happy #GivingTuesday! Explore the impact your contributions and support can make as we strive to empower families with essential information, resources, and tools for informed healthcare decisions. Ready to make a difference? Click here: bit.ly/3uEQzyc.
Baby's First Test retweeted
Empower your health journey this holiday season by learning the importance of knowing your family's health history and how to initiate these conversations. Use the link in our bio to access these resources. @GlobalGenes @rarediseasediv1 #familyhealth
Baby's First Test retweeted
Today we recognize World Sanfilippo Awareness day, a rare genetic metabolism disorder that makes the body unable to break down certain carbohydrates, leading to serious problems in the brain and nervous system #CareAboutRARE #SanfilippoSyndrome
Baby's First Test retweeted
We are committed to raising awareness about newborn screening. The 2023 NBS Bootcamp was an opportunity to learn and discuss new developments with experts and patient advocates. We are excited to continue and advance our state and federal work! Learn more buff.ly/46gM7T8
Baby's First Test retweeted
Genetic counselors — today is your day! We appreciate your dedication to providing patients with the information they need to make the best decisions for their health and well-being. We extend a heartfelt thank you to our #geneticcounselors, Marianna Raia and @agavig!
Baby's First Test retweeted
Tune in on Tuesday, November 14th at 10:30 AM EST as the recipients of our Know Your Family History Implementation Grant share the diverse strategies they're using to spread awareness about the importance of knowing your #familyhistory. Register here: bit.ly/3QgKNtA.
Baby's First Test retweeted
RSV affects nearly every child by the time they turn 2. Survey data from @InfantCoalition and @PatientAccess highlights the experiences of parents whose children had RSV and the health care providers who care for them. Read more: admin.allianceforpatientacce… #RSVAwarenessMonth
