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October 2017

PH Professional Network Symposium

October 5 - October 7
Bethesda North Marriott Hotel,
5701 Marinelli Road
North Bethesda, MD 20852 United States
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The Pulmonary Hypertension Association (PHA) and the PH Professional Network (PHPN) invite all pulmonary hypertension (PH)-treating health care professionals, students and trainees to join us for the 2017 PHPN Symposium, Navigating the Future: Individualizing Patient Care in the Face of Increasingly Complex Treatment Options. The Symposium will take place from Oct. 5 through 7, 2017 in North Bethesda, Maryland, and will feature CME/CEU-accredited sessions for nurses, nurse practitioners, pharmacists, pharmacy technicians, physicians, physician assistants, respiratory therapists and social workers. Following the theme of precision…

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XLH Day

October 6 - October 7
Frank H Netter MD School of Medicine-Quinnipiac University,
370 Bassett Road
North Haven, CT United States
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Join the XLH Network for XLH Day on October 6-7, 2017 in Connecticut! You will meet other families dealing with XLH, discuss the challenges, learn how others cope, and develop new strategies for managing your own or your child’s symptoms. There will be a casual Meet and Greet on Friday evening at the Frank H Netter MD School of Medicine, as well as a dinner gathering on Saturday evening at Wharton Brook State Park, and a Walk/Run fundraiser on Sunday morning. In between,…

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2017 MSA Coalition Patient & Family Conference

October 13 @ 9:00 am - October 14 @ 4:00 pm
Nashville Airport Hotel,
2200 Elm Hill Pike
Nashville, TN 37214 United States
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Location: Nashville, Tennessee USA Start time: 9:00 AM – Friday, October 13th End time: 4:00 PM – Saturday, October 14th  Medical Host: Vanderbilt University Medical Center Medical Team:  Bonnie Black, RN, NP Daniel Claassen, MD Amanda Peltier, MD David Robertson, MD Space is limited so register early!   This is not a NORD sponsored event. This event is being hosted by a NORD member organization.

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Intracranial Hypotension Symposium

October 14
Casa Del Mar,
1910 Ocean Way
Santa Monica, CA 90405 United States
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Why You Should Attend This full-day multidisciplinary symposium on intracranial hypotension secondary to spinal cerebrospinal fluid (CSF) leak brings together top clinicians and researchers to share the latest advancements in diagnostics and treatments of this underdiagnosed, disabling but treatable secondary headache disorder. Clinicians, researchers and patients are invited to attend. The speakers will include representation from a range of subspecialties, including neurology, neurosurgery, neuroradiology, pain management/anesthesiology, integrative medicine and clinical genetics. There will be a professional track and a patient/caregiver…

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2017 Rare Diseases and Orphan Products Breakthrough Summit

October 16 - October 17
Marriott Wardman Park,
2660 Woodley Rd NW
Washington, DC 20008 United States

NORD’s Rare Diseases and Orphan Products Breakthrough Summit is the largest and most meaningful multi-stakeholder event of its kind – historically featuring over 20 speakers from the FDA, participation from over 80 patient organizations and the Pharma/Biotech industry’s foremost experts in orphan product innovation, investment and commercialization. The 2017 #NORDSummit is your opportunity to collaborate with the top leaders from the FDA, NIH, industry, patient groups, payers and research institutions to address the progress and innovations in rare disease diagnosis,…

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2017 Rare Neuro-Immune Disorders Symposium

October 20 @ 8:00 am - October 21 @ 5:00 pm
Hilton Columbus at Easton,
3900 Chagrin Dr.
Columbus, OH 43219 United States
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An education and advocacy conference for families, caregivers and individuals diagnosed with Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and  Transverse Myelitis (including the subtype Acute Flaccid Myelitis).   This event is not being sponsored by NORD. This event is being hosted by a NORD member organization.

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Towards Transformative Therapies for Sickle Cell Disease

October 24 @ 9:00 am - 5:00 pm
The New York Academy of Sciences,
250 Greenwich St.
New York, NY 10007 United States
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SPEAKERS: Kenneth I. Ataga, MD, University of North Carolina at Chapel Hill; Philip D. Gregory, DPhil, bluebirdbio; Josh Lehrer, MD, Global Blood Therapeutics; Deepa Manwani, MD, The Children's Hospital at Montefiore, Albert Einstein College Of Medicine; Debra Pittman, PhD, Pfizer; Andreas Reik, PhD, Sangamo BioSciences; Vijay G. Sankaran MD, PhD, Boston Children's Hospital, Harvard Medical School; Wally Smith, MD, Virginia Commonwealth University Medical Center DESCRIPTION: This symposium will explore recent developments in the field including elucidation of biological mechanisms of disease and cutting-edge clinical science, while underscoring…

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Annual International ECD Medical Symposium

October 26 @ 8:00 am - 5:00 pm
New York Marriott East Side Hotel,
525 Lexington Avenue at 49th Street
New York, NY 10017 United States
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During this annual event, medical professionals from around the world gather to share scientific findings, patient outcomes and case studies, and new developments in Erdheim-Chester disease.  This also allows time for collaboration among physicians specializing in different therapies, encouraging a support system within the medical community.   This event is not being sponsored by a NORD member organization. This event is being hosted by a NORD member organization.

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CurePSP International Research Symposium

October 26 @ 5:00 pm - October 27 @ 7:00 pm
Mission Baby Conference Center at UCSF,
1675 Owens Street #251
San Francisco, CA 94158 United States
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CurePSP conducts an annual International Research Symposium to facilitate dissemination of advances in the fields of PSP, CBD, MSA, and related brain diseases. This symposium highlights research by CurePSP grantees and is open to all researchers interested in clinical and basic studies of PSP, CBD, and related tauopathies. The Research Symposium also assists the Scientific Advisory Board in identifying work of exceptional promise, which may then be considered for additional funding. This is not a NORD sponsored event. This event…

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Annual International ECD Patient & Family Gathering

October 27 @ 8:00 am - 5:00 pm
New York Marriott East Side,
525 Lexington Avenue at 49th Street
New York, NY 10017 United States
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Part of the ECD Global Alliance mission is to educate and support patients with the information they need to advocate for their health and quality of life.  The purpose of the Patient and Family Gathering (PFG) is to unite international patients and family members as well as increase their knowledge and understanding of Erdheim-Chester Disease.   This event is not being sponsored by NORD. This event is being hosted by a NORD member organization.

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