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: https://t.co/6ShJHYMq4Y
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: https://t.co/9D92koCirn
#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
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
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. https://t.co/lo4yM4mxvs
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: https://t.co/lo4yM4mxvs
#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
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: https://t.co/dlli9I60Bt
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: https://t.co/uul06b4Qqx
#familyleadership#changemakers#supportingfamilyleaders