RareRising

RareRising, is a 501c3 that delivers research, incubates emerging rare disease entities, and explores solutions to positively impact rare disease communities.

[RareRising @RareRising_Org]

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: https://t.co/3Nq6VD3Kjo

[RareRising @RareRising_Org]

Happy holidays and best wishes for a wonderful 2026! Let's work together to make difference for Rare together next year!

[RareRising @RareRising_Org]

We had such an amazing time representing RareRising at the Women in Government Leadership & Innovation Summit.

[Neurocrine Biosciences @neurocrine]

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

[RareRising @RareRising_Org]

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.

[RareRising @RareRising_Org]

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.

[RareRising @RareRising_Org]

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 https://t.co/Xe94wGg20R to find Spanish-language resources and join our community.

[RareRising @RareRising_Org]

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.

[RareRising @RareRising_Org]

Excited to represent RareRising and promote our State Zebra Network at the National Conference of State Legislators (NCSL) meeting in Boston!

[RareRising @RareRising_Org]

Did you know, two of the main challenges participants noted beyond the physical symptoms of their disease were barriers and gaps in healthcare access and challenges in communication between patients and providers? Download the full report from our website: https://t.co/UiNxvgJvGM

[RareRising @RareRising_Org]

We were excited to partnered with The Coalition for Hemophilia B on the “Health Equity in the Hemophilia B Community: Perspectives of Patients’ Report Findings” project! You can view the full report on our website https://t.co/UiNxvgJvGM

[RareRising @RareRising_Org]

Thanks CHB for the opportunity to speak on the findings of the Health Equity in the Hemophilia B Community: Perspectives of Patients’ Report Findings. You can download a copy of the report on our website: https://t.co/4AS974KW1O

[RareRising @RareRising_Org]

Have you heard of the amazing resource available for Caregivers of Children with Rare and/or Serious Illnesses? Our president, Kimberly, and board member, Mousumi, were both authors on the project! https://t.co/hwJ8HikHG9

[RareRising @RareRising_Org]

We invite you to see our RareLab Pilot Program in action! Join our RareLab partner, GC Connexons, and learn more about Navigating the Genetic Maze! This virtual event will take place TODAY, January 30th at 1 pm Central. Register at: https://t.co/guZVCjWzFv

[RareRising @RareRising_Org]

We are excited to join with nearly 200 other organizations in signing on to the letter urging Congress to secure a long-term extension of the Rare Pediatric Disease Priority Review Voucher (PRV) program before the December 20th deadline!

[RareRising @RareRising_Org]

It's Election Day. No matter your political affiliation...VOTE! Your voice matters!

[RareRising @RareRising_Org]

It's Hispanic American Heritage Month! Antonia Novello was the first woman and the first Hispanic to serve as Surgeon General. She led several major public health campaigns to improve health conditions and access to medical care - especially for women, children, and minorities.

[RareRising @RareRising_Org]

It's Hispanic American Heritage Month! Lester Martínez López was the first Hispanic to head the Army Medical and Research Command. His Command was in charge of developing antidotes and vaccines for diseases soldiers might face on the battlefield.

[RareRising @RareRising_Org]

It's Hispanic American Heritage Month! Serena Auñón-Chancellor was the first Hispanic physician to travel in space. She spent 6 months on the International Space Station conducting medical experiments. Throughout her career with NASA, she spent 196 days in space!

[RareRising @RareRising_Org]

If you haven't signed up for our mailing list, here is a link to our October eBlast! https://t.co/IlEV8fXUuQ

[RareRising @RareRising_Org]

We are excited to announce that we have been selected as a 2024 #RAREis Global Advocate Grant recipient by the @Rareis program from @Amgen for our Somos Rare program! Learn more about the #RAREisGrant here: https://t.co/CHMwaoY8DM