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...
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Last Updated: January 7, 2020
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BPANWARRIORS
- Feb 22, 2021
- 1 min
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...
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BPANWARRIORS
- Feb 22, 2021
- 1 min
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,...
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BPANWARRIORS
- Feb 22, 2021
- 1 min
BPAN WARRIORS | RARE COURAGE
BPAN HERO: ANETTE FITCH NEDDO NOMINATED BY: Sherry "Strong, Loving, Resilient" Anette is the mother of a beautiful girl with BPAN....
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BPANWARRIORS
- Feb 21, 2021
- 1 min
BPAN WARRIORS | RARE COURAGE
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...
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BPW
- Feb 19, 2021
- 1 min
#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...
170 views1 comment
sarah6441
- Feb 15, 2021
- 1 min
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...
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sarah6441
- Feb 1, 2021
- 2 min
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"....
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sarah6441
- Jan 17, 2021
- 2 min
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...
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sarah6441
- Dec 1, 2020
- 1 min
OUR YEAR IN REVIEW
First $25,000 matched through Dec. 26, 2020. Please feel free to share with friends, family and colleagues.
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sarah6441
- Oct 26, 2020
- 2 min
ANGEL AID: "Voice of the Mother" Mission Video
While the rare diseases may be different, the shared, lived experience is universal. For anyone who missed the world premiere of the...
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sarah6441
- Oct 16, 2020
- 2 min
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
68 views1 comment
sarah6441
- Oct 13, 2020
- 4 min
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...
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sarah6441
- Sep 30, 2020
- 1 min
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...
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sarah6441
- Sep 24, 2020
- 1 min
Learn More About BPAN Global Research
Characterization of Selective Autophagy "Molecular function of WDR45/WIPI4 in ferritinophagy and neurodegeneration"
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