RareRising

Proud moment for our team Our CEO, Kimberly Haugstad, MBA, recently spoke at the Patient Advocacy & Engagement Roundtable, sharing insights on what patient organizations truly need from biopharma communications. Grateful to be part of such an important conversation shaping more meaningful, patient-centered engagement. #RareRising #PatientAdvocacy #Biopharma #HealthcareCommunications

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

The Coalition for Hemophilia B and RareRising partnered together to survey the health equity of 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. Download the report on our website: https://lnkd.in/gg4i7tpj

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. Download the full report: https://lnkd.in/gg4i7tpj

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://somosrare.org to find Spanish-language resources and join our community. Let's life every voice - because cada día es importante! #HispanicHeritageMonth #SomosRare #RareDiseaseAwareness

RareRising in partnership with The Coalition for Hemophilia B conducted a research survey on the health equity of the hemophilia B community. One issue that came up was the barrier of cost. Even with all of the insurance options and pharmaceutical discount drug programs, there is still a large out of pocket cost. Download the full report on our website: https://lnkd.in/gg4i7tpj

AI + Advocacy: Why We Should Never Give Up Hope on a Diagnosis For many families navigating rare and undiagnosed conditions, the search for answers can feel endless. But a recent case reminds us why we should never give up hope—especially when advocacy, advanced medical knowledge, and cutting-edge technology work together. After years of chronic pain and 17 specialists unable to find a diagnosis, a 4-year-old named Alex finally got the answers he needed when his mom turned to an unlikely source: ChatGPT. She entered Alex’s symptoms and MRI findings into the AI tool, which suggested a rare spinal condition called tethered cord syndrome. A neurosurgeon later confirmed the diagnosis, and Alex underwent surgery that finally brought him relief (Business Insider). This remarkable story demonstrates what’s possible when patient persistence, provider experience, and evolving technology intersect. It’s also a powerful reminder that patients and caregivers should feel empowered to speak up, keep asking questions, and seek second opinions. As tools like AI continue to evolve, they can supplement—not replace—the years of expertise and compassion that medical professionals bring to each case. At RareRising, we believe every person deserves to be seen, heard, and believed. Whether your journey includes ten appointments or one hundred, your voice matters—and breakthroughs can happen when you least expect them. Let’s continue to advocate together for access, awareness, and answers!

Did you know, two of the main challenges participants in our survey 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://lnkd.in/gg4i7tpj

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://lnkd.in/gg4i7tpj

Over 7,000 infants are identified annually for timely interventions thanks to newborn screening. Read the National Academies' Consensus Study Report https://lnkd.in/gXjYsiBP