RareRising, is a 501c3 that delivers research, incubates emerging rare disease entities, and explores solutions to positively impact rare disease communities.
Joined April 2021
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The ZIP-code lottery: a baby’s newborn screening panel can change at a state line. Compare your state’s panel with the RUSP. If there is a gap, that is an advocacy opportunity. #NewbornScreening #HealthEquity #RareDisease #statezebranetwork
Newborn screening is a state-level issue. With the federal ACHDNC dissolved in 2025, state advisory boards and public engagement matter more than ever. Find yours and ask how families can participate. #NewbornScreening #HealthPolicy #statezebranetwork
A tiny sensor can help detect critical congenital heart defects before symptoms are obvious. That’s the newborn heart screen. #NewbornScreening #CCHD #StateZebraNetwork
Why screen so soon? Because some serious conditions can cause harm before symptoms appear. Early screening creates an opportunity for early action. #NewbornScreening #RareDisease #StateZebraNetwork
A newborn hearing screen is quick and painless and can help identify hearing loss early. Early answers mean earlier access to support. #NewbornScreening #HearingScreening #StateZebraNetwork
Transparency matters in newborn screening. Can families find your state’s advisory meetings, annual reports, and nomination process? If not, that is an advocacy opportunity. #NewbornScreening #RareDiseaseAdvocacy
Healthy-looking does not always mean there is nothing happening underneath. Newborn screening helps find serious conditions before symptoms appear. #NewbornScreening #RareDisease
RareRising retweeted
Join us on 9/9 to discuss “Building a Path to Successful Newborn Screening Implementation in Virginia.”
Register at forms.cloud.microsoft/r/iCAz…
#RareandReady #NewbornScreening
Meet the blood spot screen: a few drops of blood, usually collected 24–48 hours after birth, can screen for serious conditions where early treatment matters. #NewbornScreening #RareDisease
Newborn screening happens nationwide, but programs vary by state. Know what is included where you live: newbornscreening.hrsa.gov/yo… #NewbornScreening #StateZebraNetwork
September is #NewbornScreeningAwarenessMonth. A small screen can make a big difference by helping identify serious conditions early, when treatment may have the greatest impact. #NewbornScreening #RareDisease #StateZebraNetwork
Collaboration is at the heart of everything we do.
RareRising is supporting the State Zebra Network exhibit at the National Conference of State Legislatures (NCSL) Legislative Summit in Chicago. @WiRareAlliance @AlabamaRare @MIrarecoalition @illinoisrare @WiRareAlliance
Are you ready for the 2026 PCORI Annual Meeting? @PCORI is offering a select number of financial scholarships to cover domestic travel and hotel expenses incurred to attend the meeting this Fall in the Washington D.C. Metropolitan area! Apply by May 31: pcori.me/4vpWS3A
Happy holidays and best wishes for a wonderful 2026! Let's work together to make difference for Rare together next year!
We had such an amazing time representing RareRising at the Women in Government Leadership & Innovation Summit.
Thank you to the Women in Government Leadership & Innovation Summit for a co-sponsored discussion by Neurocrine Biosciences and @ultragenyx on the challenges and opportunities across the rare disease journey, from diagnosis to transitions of care.
The conversation was moderated by California State Assemblymember Diane Dixon with panelists and experts in the rare disease community – Kimberly Haugstad from @RareRising_Org and Jamie Sullivan from @EveryLifeOrg for Rare Disease. The conversation explored how state leaders can create meaningful impact by elevating the voices of rare disease patients and families in policymaking. Thank you to all involved who helped make this discussion possible. #LIS2025
While surveying the hemophilia B community, we found that another barrier was physical access to care. This was a real concern for rural patients. 45% reported feeling they had been denied access to care or specialists due to factors like gender, race, or location.
It's clear in our report that work is definitely a barrier for our hemophilia B community members. 57% of patients surveyed estimated an annual income loss of $5,000 or more. 36% had to either quit their job or reduce their hours due to their hemophilia B.
Did you know roughly 6 million Latinx individuals are living in the US with a rare disease today? Somos Rare is here to connect, empower, and inform Spanish-speaking families and caregivers. Visit somosrare.org to find Spanish-language resources and join our community.
RareRising & The Coalition for Hemophilia B conducted a research survey on the health equity of the hemophilia B community. One issue was the barrier of cost. Even with the insurance options and pharmaceutical discount drug programs, there is still a large out of pocket cost.
