Friends,

As we continue navigating a year defined by rapid change and adaptation, I want to extend my sincere appreciation for your partnership and support. We are fortunate to collaborate with remarkable individuals and organizations that are advancing progress across the rare disease landscape. As a CEO, I am continually inspired by their determination—and as a rare mom, I remain deeply grateful.

As we move closer to the end of the year, we want to share meaningful impact that is being made. Having the opportunity to help these organizations shine is what RareRising is all about!  Please join me in recognizing a few of the successes of the outstanding initiatives highlighted below.

Warm regards,

Kimberly Haugstad, MBA
President / CEO  
RareRising                                                                                        

Spotlight: IgA Nephropathy Foundation Launches Their Go Global Initiative 

The IgA Nephropathy Foundation has introduced its Go Global Initiative to expand education, advocacy, and support for patients, caregivers, and clinicians beyond the United States. The program launched its international efforts in Canada in 2025 and is now developing strategies to extend into Australia, Japan, the Philippines, the United Kingdom, Mexico, and more.

*RareRising served as a strategic partner through our RareInc division, contributing to the program’s design and development.

Spotlight: Launch Of The State Zebra Network

The State Zebra Network (SZN) brings together state rare disease coalitions committed to advancing policy and systems change at the state level. This alliance fosters collaboration, fills existing gaps, and enables peer-to-peer leadership development to strengthen local impact.

*RareRising hosts the network and contributes strategic guidance through our RareLab.

Spotlight: GC Connexons Completes Pilot Stage Of Program

The GC Connexons Program connects genetic counseling students with rare disease advocacy organizations. Under the mentorship of experienced genetic counselors, students complete applied projects that enhance the capacity of patient organizations while expanding the students’ professional experience in the rare disease space.

*RareRising hosts and supports the pilot through our RareLab.

Spotlight: Health Equity Collaboration Project With The Coalition For Hemophilia B

RareRising partnered with The Coalition for Hemophilia B on “Health Equity in the Hemophilia B Community: Perspectives of Patients’ Report Findings.” The project highlights critical insights into access and disparities within the hemophilia community. The full report is available in English and Spanish on our website.

*RareRising provided advisory and research support through our RareLab.

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