National Family Center

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

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

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

To know us is to know our unwavering commitment to ensuring key #stakeholders are authentically engaged throughout the entire process. This is the key to real and meaningful change. #familyleaders #systemschange

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

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

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

Presented below are a couple of freeform questions from our #FamilyLeaderSurvey that enabled us to capture the voices of #familyleaders. #familyleadership #familyleadersupport #familyengagement

"We need to make sure that #familyleaders are paid for their time and expertise." - Vicki Hunting (@ExpectHealthOrg) #FamilyLeaderSurvey #familyleadersupport #familyleadership #familyengagement

A total of 104 #FamilyLeaders from 38 states and 3 territories participated in our #FamilyLeaderSurvey, providing a diverse range of valuable perspectives in their responses. #FamilyLeaderSurvey #familyengagement

"We should ask ourselves what do #familyleaders need to be equipped to participate in systems work." - @MollyMartzke #FamilyLeaderSurvey #familyengagement

Happening now - there's still time to join us and learn what #familyleaders shared with us about their journeys! Register here: bit.ly/47FEzdh #familyleadership #familyleadersupport #familyengagement

Today, we are excited to share the results of our #familyleader survey with you! Register now so you don't miss out: bit.ly/47FEzdh #familyleadership #changemakers #supportingfamilyleaders

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 #RareImpactAwards celebrate individuals, organizations and innovators who have made strides to benefit the #RareDisease community. Nominations for the 2024 Rare Impact Awards are NOW OPEN! Nominate your rare hero today: bit.ly/3HvpEYM

Don't forget to tune in tomorrow as we explore the insights we gained from our Family Leader Survey and learn how to support #familyleaders at every stage of their leadership journey. Register here: bit.ly/47FEzdh #familyleadership #changemakers #supportingfamilyleaders

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

Today, on #MaternalHealthAwarenessDay, let's raise our voices for the well-being of moms everywhere because EVERY mother deserves access to quality healthcare. Check out @acog's dedicated website for #maternalhealth resources: bit.ly/3u6sal4. #supportmoms #healthymoms

Has your child lost their Medicaid or CHIP benefits? Learn what to do at familyvoices.org/unwinding. #unwinding #CYSHCN #Medicaid #StayCovered #PublicHealth @LPFCH @HRSAgov