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July 2019

FASEB Helicase and Nucleic Acid-based Machine Conference

July 21 @ 8:00 am - July 26 @ 5:00 pm
Steamboat Grand Hotel, 2300 Mt. Wener Circle
Steamboat Springs, CO 80487 United States
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Malfunctions of helicases and nucleic acid-based machines are implicated in a number of rare genetic disorders. Specifically, hereditary mutations in helicase genes are linked to rare diseases including Werner Syndrome, Bloom’s Syndrome, Rothmund-Thomson Syndrome, Cockayne Syndrome, Xeroderma Pigmentosum, Trichothiodystrophy, Warsaw Breakage Syndrome, Fanconi Anemia, Dyskeratosis Congenita, Crohn’s Disease, Ophthalmoplegia, and others. This FASEB meeting, which was first held in 2001, examines the roles of these and related helicases in genome metabolism and rare diseases. The meeting is the only one…

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NORD Webinar: Self-Advocacy and Care Coordination

July 24 @ 2:00 pm - 3:00 pm

Do you want to learn how to better advocate for yourself in a healthcare setting? Are you curious how care coordination fits into a successful treatment plan? We will cover these topics and more in a free webinar on July 24 at 2:00pm EDT. Join us as Laran Hyder, Director of Education and Outreach at the Neuroendocrine Tumor Research Foundation (NETRF), explains self-advocacy and how you can develop skills to become a more effective self-advocate. Then, NORD’s own Jill Pollander, Director of…

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6th Glycoproteinoses International Conference

July 25 @ 8:00 am - July 27 @ 5:00 pm
Atlanta Marriott Alpharetta, 5750 Windward Parkway
Alpharetta, GA 30005 United States
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The ISMRD Board of Directors will bring the 6th International Conference for Glycoprotein Storage Diseases to Atlanta, Georgia, USA! This conference will once again bring basic scientists, clinicians and families together to share knowledge and inspiration as we continue towards the goal of translating basic science discoveries into therapies for the glycoproteinoses.  We strive to highlight the most current advances in research and to discuss openly how these advances can be developed in treatments that will improve the quality of life for…

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September 2019

Pyruvate Kinase Deficiency (PKD): Externally-Led Patient Focused Drug Development Meeting

September 20 @ 9:30 am - 3:30 pm
College Park Marriott Hotel & Conference Center  , 3501 University Blvd E.
Hyattsville, MD 20783 United States
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NORD and the Foundation for Rare Blood Diseases (SZB) invite you to an externally-led Patient Focused Drug Development (EL-PFDD) meeting on Pyruvate Kinase deficiency (PKD), taking place Friday, September 20.  If you are a patient, family member or caregiver affected by PKD, this is an important opportunity to have your voice heard.  EL-PFDD meetings provide an opportunity for patients, their families and caregivers to share critical information about the impact of their disease on their daily lives and their experiences…

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