top of page
Search

BPAN WARRIORS | RARE COURAGE
BPAN HERO: MIET NEETESONNE NOMINATED BY: Andy Verhaegen, Husband "Strong, Caring, Sweet" There are a million reasons why Miet is my...
BPANWARRIORS
Feb 22, 20212 min read
58 views
0 comments

BPAN WARRIORS | RARE COURAGE
BPAN HERO: FINLEY NOMINATED BY: Beckie (Mom) "Considerate, Patient, Fierce" Finley is 8 years old. He is the most amazing, loving and...
BPANWARRIORS
Feb 22, 20211 min read
68 views
0 comments

BPAN WARRIORS | RARE COURAGE
BPAN HERO: MIKE BUI NOMINATED BY: Tram Thai, Wife "Super-duper Dad!" Mike took care of Nhi - our daughter, a Bpanner, for 6 months,...
BPANWARRIORS
Feb 22, 20211 min read
16 views
0 comments


#WRDD2021: AN UNFINISHED STORY
In preparation for World Rare Disease 2021, February 28, 2021, founder of BPAN Warriors, Sarah Chisholm put together a brief video of her...
BPW
Feb 19, 20211 min read
192 views
1 comment


Wdr45 Knockout Mouse - Data Now Available
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...
sarah6441
Feb 15, 20211 min read
126 views
0 comments


WHAT IS A PHENOTYPE?
"Phenotype" simply refers to an observable trait. "Pheno" simply means "observe" and comes from the same root as the word "phenomenon"....
sarah6441
Feb 1, 20212 min read
153 views
0 comments


COLLECTION OF BPAN PATIENT CASE STUDIES REPORTED IN PUBLISHED LITERATURE
FROM OUR PARTNERS AT GENOMENON: Providing Rare Patients, Clinicians and Researchers Alike, A Powerful Tool to Learn More About BPAN What...
sarah6441
Jan 17, 20212 min read
43 views
0 comments


Sanford CoRDS Great Plains Rare Disease Day Summit 2020
The 2020 Sanford CoRDS Great Plains Rare Disease Day Summit went virtual this year with a focus on technologies and clinical tools for thera
sarah6441
Oct 16, 20202 min read
79 views
1 comment


BPAN | WDR45 Phenotypic and Imaging Spectrum Associated With WDR45
Source: Phenotypic and Imaging Spectrum Associated With WDR45 https://www.pedneur.com/article/S0887-8994(20)30084-9/fulltext#secsectitle0...
sarah6441
Oct 13, 20204 min read
186 views
0 comments

BPAN Warriors SMAB Member, Lena Burbulla Awarded 1.5 Million Euro Grant
Lena Burbulla Recipient of Prestigious European Research Council (ERC) Grant Professor Lena Burbulla, Research Assistant Professor of...
sarah6441
Sep 30, 20201 min read
155 views
0 comments
Blog: Blog2
bottom of page