Join our network of patient advocacy groups who are part of our collaborative network that serves children with rare and catastrophic...

Using Technology to Increase Access to Rare Disease Research

BPAN HERO: ALANNA MABEY NOMINATED BY: Jamii Stock "Selfless, Generous Compassionate" Alanna provides support to our large, dynamic...

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: KACI KEGLER NOMINATED BY: Kate Watkins "Strong, Brave, Caring" Kaci’s daughter, Noelle was diagnosed with BPAN a few years...

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....

BPAN HERO: LIZ BRADFORD NOMINATED BY: Barbara Tapper "Dedicated, Loving, Inspiring" Liz is a true BPAN Warrior. She is dedicated,...

BPAN HERO: DARLENE JONES NOMINATED BY: Stephanie Sisneros, Daughter "Courageous, Strong, Loving" My mom has to be the strongest woman...

BPAN HERO: JENNIFER DESHER NOMINATED BY: Robyn Desher, Mother-In-Law "Strength, Compassion, Bravery" My quiet shy daughter-in-law,...

BPAN HERO: GLENN MCBURNEY NOMINATED BY: Donna McBurney "Selfless, Compassionate, Dedicated" Glenn is my ex-husband and Elijah’s Dad....

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...

The parent-led research foundation, BPAN Warriors, announced today the launch of their groundbreaking BPAN Digital Natural History Study...

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"....

Watch Discovery Channel's Newswatch App review of the Epilepsy Foundation My Seizure Diary platform. Epilepsy Foundation My Seizure Diary...

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.