NKH Remembrance Day
November 2nd launches NKH Remembrance Day and the launch of this year's Fighting for Fiona & Friends fundraising campaign. …
News
Notre Dame Day 2020!
Thank you for every donation!!! You made us the top Center/Institute and top 1% (7/800) of all groups!!!!
Alone We Are Rare, Together We Are Strong!!
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ND Day 2020 donation website is now live for your donations!
Undergraduate students publish research on the Von Hippel Lindau gene in highly cited international journal
Yanting Luo (ND ’20) and Louise Medina Bengtsson (ND 21) are undergraduate co-first authors on their research on how defect in the Von Hippel-Lindau (VHL) gene causes renal cancer, published in Scientific Reports this month. Photo shows Yanting and Louise presenting VHL research at the 2019 Midwestern Metabolism Meeting. Congratulations to both and their mentor Dr. Xin Lu, Boler Assistant Professor.…
Welcome Dr. Christopher Patzke John M. and Mary Jo Boler Assistant Professor
Dr. Christopher Patzke joins CRND as John M. and Mary Jo Boler Assistant Professor.
Christopher Patzke studied Biology at the Freie Universität in Berlin and the École Normale Supérieure in Paris. He received his PhD training in the laboratory of Dr. Fritz Rathjen at the Max-Delbrück-Center in Berlin and his postdoctoral training at the Stanford University in the laboratory of Dr. Thomas Südhof.…
Read More about Welcome Dr. Christopher Patzke John M. and Mary Jo Boler Assistant Professor
New penile cancer therapy by Lu Lab
Penile squamous cell carcinoma (PSCC) although rare in the US, contributes to a larger proportion of cancers in countries with developing economies. A major barrier has been the lack of a good animal model to better understand and develop treatments for the disease. In a paper published in Nature Communications https://www.nature.com/articles/s41467-020-15980-9.pdf…
FFF-ND NKH News Today New Issue Available!
To view newsletter, click on photo below.
Request for Nominations: Patient Advocacy and Rare Disease Research Awards
All current undergraduate students in their senior year may be nominated.
The Megan K. Crowley Award
This award recognizes outstanding contributions in the areas of Rare Disease Patient Advocacy at the Boler-Parseghian Center. Such contributions may include, but are not limited to: 1) Raising awareness of Rare Diseases at the University of Notre Dame with regional, national and international organizations 2) Developing products/tools/technologies that help rare disease patients and their families with communications and disease management. Awardees will receive a $1000 cash award and a plaque.…
Read More about Request for Nominations: Patient Advocacy and Rare Disease Research Awards
Fiona and Friends Walk for NKH
St. Louis Family to hold NKH Research Fundraiser!
Proceeds from this event will be used for NKH Research at the Boler Parseghian Center for Rare and Neglected Diseases.
Visit https://sites.google.com/view/norajanefoundation/home for more information!
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Read More about St. Louis Family to hold NKH Research Fundraiser!
Megan K. Crowley Award for Patient Advocacy | John M. and Mary Jo Boler Rare Disease Research Award
Congrats to Megan K. Crowley! Megan received the Megan K. Crowley Award for Patient Advocacy, whose recipient Megan Crowley, ND ’19 is a tireless patient advocate and President of the Notre Dame Chapter of Make a Wish Foundation that aims to grant a wish of every child diagnosed with a life threatening condition. CRND is honored Megan came to study at Notre Dame.…
A Bi-Annual Newsletter for the Non-Ketotic Hyperglycinemia Rare Disease Community & Beyond
Dear NKH Supporters,
We’re excited to share a new family initiative taken on by the Fitzpatrick, Nohelty, and Sarb families - a bi-annual newsletter for the NKH community.
The goal of the newsletter is three-fold, to: 1) to share information, 2) increase awareness and 3) together, accelerate progress in the fight against NKH.…
Lu receives Susan G. Komen grant to study how breast cancer spreads
Xin Lu, the John M. and Mary Jo Boler Assistant Professor of biology, was awarded a 2018 Susan G. Komen research grant to identify potential new therapies for treating metastatic breast cancer.
Read More about Lu receives Susan G. Komen grant to study how breast cancer spreads
Models for Accelerating Academic Rare Disease Research and Innovation: A Working Session Hosted by Notre Dame
An interactive working session hosted by Notre Dame to explore how universities can accelerate rare disease research and discovery through innovation, entrepreneurship and cross-sector partnerships.
Co-chairs:
John Crowley, Chairman and CEO of Amicus Therapeutics and Founding Board Member of Global Genes…
In Honor of the late Dr. Stanley Falkow
Ralph Isberg, Editorial Advisor and former Section Editor for PLOS Pathogens, remembers his friend, colleague, and mentor Stanley Falkow, and reflects on his contributions to the understanding of bacterial pathogens and his commitment to mentorship.
When I first entered the Falkow lab as a postdoctoral fellow in December 1983, I possessed a strange combination of naivete and arrogance that played to Stanley’s strengths. This allowed him to shut down the still and extremely small voice in his head that said: “Maybe this is a bad idea.” Only after success occurred, and I imagine only very rarely, did he ever reveal evidence of this voice.…
CTSS 2018
Notre Dame Day 2018
Watch / Give / Vote
Click on the picture below to learn more about ND Day 2018!
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Follow up on Rare and Neglected Disease Day 2018
This year’s Rare Disease Day Conference started strong on Friday, February 9th, with exceptional research talks along with patient perspectives on the importance of research for Rare Diseases. NonKetotic Hyperglycinemia, Rare Cancers, Cystic Fibrosis and Niemann Pick Type C were some of the research topics presented. Sadly, Saturday was cancelled due to a snow blockade, but we present great highlights from Friday below.…
Read More about Follow up on Rare and Neglected Disease Day 2018
CRND Newsletter and Christmas Greetings 2017
RareND Chipotle Fundraiser
Needing another excuse to go to Chipotle? Bring your friends next Tuesday to raise money for rare disease awareness and education!! Half of your purchase will go to RareND. Just show the cover photo of this event at checkout or tell them you're there for the RareND fundraiser!
Visit the facebook event link for more information:…