Ara Parseghian Medical Research Fund

09/09/2026

A meaningful step forward for the Niemann-Pick disease, type C (NPC) community.💜

We are thrilled to celebrate this important announcement from our friends and partners Beren Therapeutics: the launch of Test for NPC, a national program designed to help identify children with NPC who may otherwise remain undiagnosed.

We are grateful to stand alongside organizations like Beren who are working to advance care for the NPC community and help ensure that more families have answers sooner.

Every diagnosis matters. Every day matters. And every step forward gives families more hope ✨

is one of many childhood dementias. It's estimated that approximately two-thirds of people living with NPC in the United States remain undiagnosed. By comparison, approximately two-thirds of people with NPC are diagnosed in Europe. Earlier diagnosis is achievable. We should not accept a diagnos...

09/04/2026

We are honored💜

Thank you Belmont Bruins for joining the fight to find a cure 🎗️

"Will's Match honors the life of Will Lansdown, the brother of Belmont's Madison Lansdown. In support of Will's legacy and the fight against Niemann-Pick Type C (NPC) disease, $5 from every ticket sold will be donated to the Ara Parseghian Medical Research Fund, which supports research dedicated to finding a treatment and, ultimately, a cure for NPC disease."

Bruins welcome South Alabama, Samford and Middle Tennessee to Curb Event Center

08/19/2026

Researchers are evaluating an investigational once-daily oral medication, nizubaglustat (AZ-3102), in a Phase 3 study for people living with NPC to see if it has the potential to slow the progression of the disease.

Additional eligibility criteria apply, and a study team member can help determine whether participation may be a fit. You can visit https://navigate.azafaros.com/npc to learn more.

To connect with a dedicated Leapcure team member and learn more, start by completing this brief questionnaire: https://lpcur.com/npc-research

08/19/2026

Rare disease care is changing every day. Join NORD on Thursday, Aug. 27, from 3-4 p.m. ET for a "Living Rare, Living Stronger" webinar on improving your or your loved one's care.

Learn from experts from NORD and our Rare Disease Centers of Excellence Emory University School of Medicine, Cleveland Clinic, and Ann & Robert H. Lurie Children's Hospital of Chicago, along with patient advocate Jessica Contreras.

Have questions? Submit them when you register and join us for a live Q&A! If you can’t attend live, everyone who registers will receive the recording.

Register here: https://bit.ly/3UijVyX

Spread the word to those who could benefit from this free event!

08/18/2026

04/23/2026

☘️ Notre Dame Day shows us what’s possible when a community comes together

Because of you - we continue to
• fund critical research
• expand awareness
• inspire hope

This is just a number
It’s more time, more answers and more moments that matter

We are so grateful - hallelujah 🫶🏻✨

04/23/2026

03/03/2026

02/27/2026

🦓Rare Disease Day - It is about the families who turn heartbreak into advocacy, researchers who refuse to give up and patients who inspire us with courage beyond words.

✨Together, we are stronger
Together, our light shines brighter
And together, we will continue to raise awareness and pursue answers for those who inspire us the most

Join us 💜🩷💚🩵

Every rare disease diagnosis carries a story. For some patients and families, the journey is swift. For many others, it’s years of unanswered questions, misdiagnoses, and uncertainty before finally finding clarity.

On , we stand with the rare disease community — honoring the strength and resiliency of patients, caregivers, advocates, and researchers who walk these journeys every day.

At the University of Notre Dame, that commitment goes beyond awareness. Through the Patient Advocacy Initiative and the Boler-Parseghian Center for Rare Diseases, we advance research, advocacy, and education to better serve those affected by rare diseases.

Join us on February 28 as we gather for our fourth annual lighting ceremony, when the Word of Life Mural (“Touchdown Jesus”) will shine in Rare Disease Day colors as a symbol of solidarity and hope: https://bit.ly/4tRUPEu

🩷🩵💚💜

🕖 7 pm
📍 Hesburgh Libraries