BPAN HERO: MIET NEETESONNE NOMINATED BY: Andy Verhaegen, Husband "Strong, Caring, Sweet" There are a million reasons why Miet is my...

BPAN HERO: FINLEY NOMINATED BY: Beckie (Mom) "Considerate, Patient, Fierce" Finley is 8 years old. He is the most amazing, loving and...

BPAN HERO: MIKE BUI NOMINATED BY: Tram Thai, Wife "Super-duper Dad!" Mike took care of Nhi - our daughter, a Bpanner, for 6 months,...

BPAN HERO: ANETTE FITCH NEDDO NOMINATED BY: Sherry "Strong, Loving, Resilient" Anette is the mother of a beautiful girl with BPAN....

FOR ALL THE BIG AND LITTLE THINGS THAT OUR RARE DISEASE COMMUNITY DOES ON A DAILY BASIS - WE HONOR YOU! In the week leading up to World...

In preparation for World Rare Disease 2021, February 28, 2021, founder of BPAN Warriors, Sarah Chisholm put together a brief video of her...

As part of the new effort of the NIH Common Fund Knockout Mouse Phenotyping Program is leading the way as part of the International Mouse...

"Phenotype" simply refers to an observable trait. "Pheno" simply means "observe" and comes from the same root as the word "phenomenon"....

FROM OUR PARTNERS AT GENOMENON: Providing Rare Patients, Clinicians and Researchers Alike, A Powerful Tool to Learn More About BPAN What...

First $25,000 matched through Dec. 26, 2020. Please feel free to share with friends, family and colleagues.

While the rare diseases may be different, the shared, lived experience is universal. For anyone who missed the world premiere of the...

The 2020 Sanford CoRDS Great Plains Rare Disease Day Summit went virtual this year with a focus on technologies and clinical tools for thera

Source: Phenotypic and Imaging Spectrum Associated With WDR45 https://www.pedneur.com/article/S0887-8994(20)30084-9/fulltext#secsectitle0...

Lena Burbulla Recipient of Prestigious European Research Council (ERC) Grant Professor Lena Burbulla, Research Assistant Professor of...

Characterization of Selective Autophagy "Molecular function of WDR45/WIPI4 in ferritinophagy and neurodegeneration"