Understanding the decision-making process around RNS, VNS, and DBS
Join our network of patient advocacy groups who are part of our collaborative network that serves children with rare and catastrophic...
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BPW
- May 1, 2021
- 1 min
Using Technology to Increase Access to Rare Disease Research
Using Technology to Increase Access to Rare Disease Research
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BPANWARRIORS
- Feb 26, 2021
- 1 min
BPAN WARRIORS | RARE COURAGE
BPAN HERO: ALANNA MABEY NOMINATED BY: Jamii Stock "Selfless, Generous Compassionate" Alanna provides support to our large, dynamic...
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BPANWARRIORS
- Feb 22, 2021
- 2 min
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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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: KACI KEGLER NOMINATED BY: Kate Watkins "Strong, Brave, Caring" Kaci’s daughter, Noelle was diagnosed with BPAN a few years...
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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,...
16 views0 comments
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 22, 2021
- 1 min
BPAN WARRIORS | RARE COURAGE
BPAN HERO: LIZ BRADFORD NOMINATED BY: Barbara Tapper "Dedicated, Loving, Inspiring" Liz is a true BPAN Warrior. She is dedicated,...
73 views0 comments
BPANWARRIORS
- Feb 22, 2021
- 1 min
BPAN WARRIORS | RARE COURAGE
BPAN HERO: DARLENE JONES NOMINATED BY: Stephanie Sisneros, Daughter "Courageous, Strong, Loving" My mom has to be the strongest woman...
41 views0 comments
BPANWARRIORS
- Feb 22, 2021
- 1 min
BPAN WARRIORS | RARE COURAGE
BPAN HERO: JENNIFER DESHER NOMINATED BY: Robyn Desher, Mother-In-Law "Strength, Compassion, Bravery" My quiet shy daughter-in-law,...
191 views0 comments
BPANWARRIORS
- Feb 21, 2021
- 1 min
BPAN WARRIORS | RARE COURAGE
BPAN HERO: GLENN MCBURNEY NOMINATED BY: Donna McBurney "Selfless, Compassionate, Dedicated" Glenn is my ex-husband and Elijah’s Dad....
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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...
186 views1 comment
sarah6441
- Feb 19, 2021
- 1 min
BPAN Warriors Partners with Ciitizen to launch a groundbreaking Natural History Study to accelerate
The parent-led research foundation, BPAN Warriors, announced today the launch of their groundbreaking BPAN Digital Natural History Study...
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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...
122 views0 comments
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 18, 2021
- 1 min
TRYING TO TRACK YOUR CHILD'S SEIZURES?
Watch Discovery Channel's Newswatch App review of the Epilepsy Foundation My Seizure Diary platform. Epilepsy Foundation My Seizure Diary...
21 views0 comments
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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