News

Megan K. Crowley Award for Patient Advocacy | John M. and Mary Jo Boler Rare Disease Research Award

Author: Corianne Kellems

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.…

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A Bi-Annual Newsletter for the Non-Ketotic Hyperglycinemia Rare Disease Community & Beyond

Author: Fighting for Fiona & Friends

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.…

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Models for Accelerating Academic Rare Disease Research and Innovation: A Working Session Hosted by Notre Dame

Author: College of Science

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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

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In Honor of the late Dr. Stanley Falkow

Author: Plos Pathogens

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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.…

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Follow up on Rare and Neglected Disease Day 2018

Author: Barb Calhoun

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.…

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RareND Chipotle Fundraiser

Author: RareND

RareND

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:…

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Neurofibromatosis Education, Patient Support, and Awareness Seminar September 23 | 9:00 am - 12:00 pm

Author: Provided

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This FREE seminar in Notre Dame, Indiana provides an opportunity to raise awareness about Neurofibromatosis and share resources, experiences, & expertise to support patient/families in our community…making sure No One Fights Alone!

Speakers include:

  • Neurofibromatosis Midwest Executive Director, Diana Haberkamp

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MNID 2017 Schedule

Author: Kasturi Haldar

MNID

Sunday August 27th 2017,  Jordon 105

Registration is free but required.

Please send registration and abstracts to Corianne Kellems at ckellems@nd.edu

 

We will start at noon, lunch will be served.

Program begins at 1:00 pm.

First session will be a joint session between MNID and the Midwest Microbial Pathogenesis Conference.…

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Hotels for Midwest Neglected Infectious Diseases Meeting (MNID) 2017

Author: Provided

All rooms are available to start booking today.

Please mention MNID Conference at the University of Notre Dame.

 

Waterford Estates Lodge

52890 SR 933 N 

South Bend, IN 46637

(574) 272-5220

$75 a room 

Block will expire on August 21st, 2017 

 

Microtel 

222 S. Dixie Way 

South Bend, IN 46637

(574) 273-4300

$84 a room 

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