NBIAcure

The NBIAcure team joined other rare disease researchers and PhD students who founded a group called “Students for Rare” to take a picture for #RareDiseaseDay with our zebra print on full display. Together our voices and efforts are stronger! #RareDiseaseDay2024

The NBIAcure team once again lit up one of the bridges in Portland for #RareDiseaseDay! The Morrison bridge was lit up for three nights (3/26-3/29) with the NBIAcure colors to raise awareness for NBIA disorders (Neurodegeneration with Brain Iron Accumulation) #RareDiseaseDay2024

Join us for two crucial PKAN gene therapy project info sessions: Nov 6, 2023, 11 AM PT Dec 4, 2023, 11 AM PT Learn about groundbreaking research led by OHSU & UMass. Register here: app.smartsheet.com/b/form/ddc7d1b… Let's make a difference together! #PKANGeneTherapy #lovingloicfoundation

Our team's statement on the new FDA-approved Rett syndrome medication and what that means for individuals with BPAN: nbiacure.org/statement-abou…

The NBIAcure team is joining Rare Disease Day's "Share Your Colours" campaign by dressing up in their colors while accessorizing with zebra print scarves because zebras are a symbol of the rare disease community. Let's raise awareness for NBIA disorders! #RareDiseaseDay2023

In case you haven't heard the news, a consensus management guideline for BPAN has been published that will help support clinicians by guiding the diagnostic process, management and surveillance at different ages and stages of BPAN! Learn more here: nbiacure.org/our-research/i…

Many families have asked us recently whether their children ages 16+ with NBIA should be vaccinated for COVID-19. Read our team's full statement here: nbiacure.org/covid-19-vacci…

Tomorrow is Rare Disease Day 2020! The NBIAcure research team at OHSU are raising their hands to bring visibility to NBIA (Neurodegeneration with Brain Iron Accumulation) disorders. #ShowYourStripes #RareDiseaseDay #rarediseaseday2020

Kelly Kozole has created a nonprofit organization called "Don't Forget Morgan" to raise money for BPAN research. Read more about her adorable daughter Morgan and the foundation's goals here: dontforgetmorgan.org Let's spread the word!

The US/Canada CoA-Z clinical trial for PKAN is now enrolling! You can start the process by sending an email to CoAZinPKAN@ohsu.edu and stating that you are interested. Learn more about the clinical trial here: nbiacure.org/coaz-clinical-…

GOOD NEWS: The US/Canada CoA-Z clinical trial will start enrolling next week! Are you ready? Learn more about the steps involved and what you can do to prepare here: nbiacure.org/coaz-clinical-…

We are so pleased to finally share that we plan to start enrollment in the CoA-Z phase 2 clinical trial in mid-December! We know the PKAN community has waited a long time to hear this news. You can find more details here: nbiacure.org/coaz-clinical-…

A paper has been published by Dr. Ody Sibon's group in the Netherlands that reveals important biochemical changes in PKAN and the overlap with related disorders (CoPAN, MePAN & PDH-E2 deficiency). Read more here: nbiacure.org/coaz-clinical-…

We've created a page to share information about the CoA-Z phase II clinical trial as we move towards launch. Currently, you can read about a CoA-Z paper that has been published and a foundational study that our team is currently completing. Read more here: nbiacure.org/coaz-clinical-…

The July newsletter recaps the meetings/training/blood draws our team was involved with at the NBIADA family conference last month and how the blood samples we collected are already being used in research studies happening around the world! Read more here: nbiacure.org/newsletter/

The NBIAcure research team at Oregon Health & Science University is raising their hands to bring visibility to NBIA (Neurodegeneration with Brain Iron Accumulation) disorders #ShowYourStripes #RareDiseaseDay

It's Rare Disease Day 2019! Today patients with a rare disease, parents/family of a child with a rare disease, and researchers working on a rare disease come together with the rest of the rare disease community to feel heard and seen: rarediseaseday.org

Our first newsletter of 2019 has been released! This issue recaps all the work we did in 2018 on each NBIA disorder. It also covers some of our plans for 2019, has a picture from Dr. Hayflick’s 60th birthday party, and more: nbiacure.org/newsletter/

A fruit fly model has revealed a possible therapeutic for PLAN. Read more about this FDA-approved medication and how to discuss it with your child's healthcare provider: nbiacure.org/fruit-fly-mode…

Today is an exciting day for all the families who have been fundraising for CoA-Z and the Spoonbill Foundation. We’ve surpassed the 1 million dollars mark! The NBIA/PKAN community may be small but this shows just how extraordinary all of you are!! nbiacure.org/spoonbill-foun…