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June 2017

NCATS Advocacy Day

June 30, 2017 @ 9:00 am - 4:00 pm
John Edward Porter Neuroscience Research Center, 35 Convent Drive
Bethesda, MD 20892 United States
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July 2017

Calling All Texans: Local PBC Event Near You!

July 11, 2017 @ 6:30 pm
Perry’s Steakhouse, 9827 Katy Freeway
Houston, TX 77024 United States
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Living with PBC: Learning Together For patients, family, healthcare professionals, and so many more! FEATURING: Certified PBC Nurse Educator, Jenny Walker, and a Patient Ambassador, Laurie Call 1-844-514-6294 to register and learn more about this PBC event!

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Living with PBC Event in Ohio!

July 20, 2017 @ 6:30 pm
Ruth’s Chris Steak House, 200 Public Square
Cleveland, OH 44114 United States
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Living with PBC: Learning Together For patients, family, healthcare professionals, and so many more! FEATURING: Certified PBC Nurse Educator, Jennifer Blood, and a Patient Ambassador, Deb Call 1-844-514-6294 to register and learn more about this PBC event!

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A Georgia Getaway AND a PBC Event!

July 26, 2017 @ 6:30 pm
Seasons 52 – Buckhead, 3050 Peachtree Rd NW
Atlanta, GA 30305 United States
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Come out to this live PBC event to learn, hear, and empower yourself on the latest PBC news and information Get the chance to listen to nurse educator, Jennifer Blood and PBC patient ambassador, Audrey!

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August 2017

2017 Tribute to Champions

August 4, 2017 @ 8:00 am - 5:00 pm
City National Grove of Anaheim, 2200 East Katella Avenue
Anaheim, CA 92806 United States
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Join Global Genes in honoring RARE champions of hope in the 2017 Tribute to Champions event in Anaheim, California! Hear from rare disease fighters and champions from all over the globe! Visit http://globalgenes.cvent.com/events/2017-tribute-to-champions-of-hope/event-summary-f9c41d21e56d4473b1569cbd7861b477.aspx?lang=en&sms=2&cn=Ng1ZqAOBfUqwFhDdCNwtFQ&refid=SocialShare to plan your trip and register now!

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2017 Endocrine Nurses’ Society of Australasia Inc. Annual Symposium

August 28, 2017
Perth Convention & Exhibition Centre, 21 Mounts Bay Rd
Perth, Perth WA 6000 Australia
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September 2017

Places You Need to Be: the International Congress of Inborn Errors of Metabolism

September 5, 2017 @ 12:00 am - September 7, 2017 @ 12:00 am
The Windsor Convention and ExpoCenter, 129 - Barra da Tijuca
Rio de Janeiro , RJ 20031-204 Brazil
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***Deadline for registration before the meeting: August 21 After this date, registration can be made onsite. Come explore the host city of the Olympic Games and one of the most beautiful places in the world, Rio de Janeiro, while attending the 13th International Congress of Inborn Errors of Metabolism!! ***Visa and yellow fever vaccination required before attending; for more visa information, visit this link. To learn more about the event, figure out travel and accommodations, register, or to contact the organizers, follow…

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The Ehlers-Danlos Society’s 2017 EDS Global Learning Conference

September 7, 2017 - September 9, 2017
Bally’s Hotel, 3645 S Lasgas Blvd
Las Vegas, NV United States
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#DazzleVegas Adult early-bird registration: $299, ends July 7 Regular registration: $349, July 7–August 28 Junior Zebra Registration: $175

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2017 Myotonic Dystrophy Foundation Annual Conference

September 8, 2017 @ 8:30 am - September 9, 2017 @ 7:30 pm
Hyatt Regency San Francisco, 5 Embarcadero Center
San Francisco, CA 94111 United States
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Your Sunshine State Getaway The 2017 Annual MDF Annual Conference Registration fee: $200-$250 — covers all conference events (general and breakout sessions, two evening social receptions, and other informational and fun events!)

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NCATS Toolkit for Patient-Focused Therapy Development Launch Event

September 8, 2017 @ 9:00 am - 4:00 pm
NIH Main Campus, 9000 Rockville Pike
Bethesda, MD 20892 United States
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Come check out and celebrate the launch of and learn more about the NCATS online resource portal including: How to establish a patient registry How to drive patient-focused discovery and pre-clinical research and development How to work with NIH and the Food and Drug Administration How to conduct post-market surveillance

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Register Now for Scientific Workshop 2017: A Rare Disease Event in D.C.

September 12, 2017 @ 8:30 am - 4:00 pm
Willard Intercontinental Hotel, 1401 Pennsylvania Ave NW
Washington D.C., DC 20004 United States
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Come out to D.C. for a day full of rare disease news and seminars given by many accomplished MDs, PhDs, and CEOs! The full agenda can be found here. Registration is currently at capacity but those interested should still register to be put on a waitlist.

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Come Out to the 6th Annual RARE Patient Advocacy Summit

September 14, 2017 @ 8:00 am - September 15, 2017 @ 10:30 pm
Hotel Irvine, 17900 Jamboree Road
Irvine, CA 92614 United States
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Come join Global Genes in attending the 6th annual rare patient advocacy summit Meet rare disease advocates from all over the world in an educational conference setting to create, share, and help with each other! photo box courtesy of http://globalgenes.cvent.com/events/2017-rare-patient-advocacy-summit/custom-35-b667f7db423b463f80ab2ef70b16b4a7.aspx Learn more about this event at http://globalgenes.cvent.com/events/2017-rare-patient-advocacy-summit/event-summary-b667f7db423b463f80ab2ef70b16b4a7.aspx

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Beach Getaway and 2017 IPPF Annual Patient Conference All-In-One!

September 15, 2017 @ 12:00 am - September 17, 2017 @ 12:00 am
Hyatt Regency, Newport Beach, 1107 Jamboree Road
Newport Beach, CA 92660 United States
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Come bask in the California/Newport Beach sun and attend discussions, workshops, and receptions with physicians, patients and advocates of pemphigus and pemphigoid! CONFERENCE ONLY (no awards dinner or entertainment): $150 per person AWARDS DINNER ONLY (Saturday night dinner + entertainment): $100 per person COMPLETE PACKAGE (conference + dinner + entertainment): $225 per person  

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Don’t Miss the National/International Acromegaly Conference!

September 22, 2017 @ 5:00 pm - September 24, 2017 @ 12:30 pm
Sheraton Vancouver Airport Hotel, 7551 Westminster Highway
Richmond, BC V6X 1A3 Canada
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Come to Canada to learn and talk more about acromegaly among specialists, professionals, advocates, patients and spouses! COST Acromegaly Patients & Spouses: FREE For all other attendees: $200.00 no refund available Register here: https://www.eventbrite.ca/e/nationalinternational-acromegaly-conference-tickets-33026461034#tickets

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October 2017

Calling All Movie Lovers: Get Tickets for the Rare Disease Film Festival

October 3, 2017
Boston Convention Center, 500 Kendall Street
Boston, MA 02142 United States
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Spend a day (or two) in Boston indulging your inner film fanatic and watching a compilation of rare disease films from across the globe! Many films are short and sweet at less than 15 minutes long. Between movies, rare disease advocates and researchers will additionally share their own personal experiences and stories with rare diseases. This is not an event you want to miss! Buy your tickets today!  

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2017 Rare Neuro-Immune Disorders Symposium

October 20, 2017 @ 7:30 am - October 21, 2017 @ 5:30 pm
Hilton Columbus at Easton, 3900 Chagrin Dr .
Columbus, OH 43219 United States
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Hosted in part by The Transverse Myelitis Association (TMA)

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November 2017

Guess Where the 5th Glycoproteinoses International Conference is?!

November 1, 2017 @ 8:00 am - November 4, 2017 @ 5:00 pm
A. Roma Lifestyle Hotel, Via Giorgio Zoega 59
Roma, Roma 00164 Italy
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ROME! Come and experience beautiful Rome as well as stimulate the exchange of ideas, form new collaborations among investigators and clinicians with different expertise, spark interest in these complex diseases among postdoctoral research fellows and graduate students, and strengthen connections among affected families around the world.  

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North American Cystic Fibrosis Conference: Register Here Now!

November 2, 2017 @ 8:00 am - November 4, 2017 @ 5:00 pm
Indiana Convention Center, 100 S. Capitol Avenue
Indianapolis, IN 46225 United States
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Come to the 31st Annual NACFC and be among 5,000 attendees, exhibitors, supporters, and staff from around the globe to learn more and talk about everything cystic fibrosis! Find out your registration fees at this link!

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HSG 2017: Elevating Huntington Disease

November 2, 2017 @ 8:00 am - November 4, 2017 @ 5:00 pm
Hyatt Regency Denver at Colorado Conference Center

Come explore Colorado while attending the annual and internationally recognized forum for training and education for Huntington disease researchers!

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PFF Summit 2017 in Nashville, Tennessee

November 9, 2017 @ 8:00 am - November 11, 2017 @ 5:00 pm
Omni Nashville Hotel, 250 5th Avenue South
Nashville, TN 37203 United States
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Registration information available soon! Keep checking their website for updates on this exciting opportunity to learn more about PF!

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International Conference on LGS in Orlando

November 10, 2017 @ 8:00 am - November 12, 2017 @ 5:00 pm
Orlando World Center Marriott, 8701 World Center Dr.
Orlando, FL 32821 United States
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Warm up your November by attending the LGS Foundation's 5th International Family and Professional conference on Lennox-Gastaut Syndrome in Orlando Registration prices for adults and children with LGS (includes entry into all sessions Friday - Sunday, breakfast and lunch on all days, the cocktail reception on Friday evening and the dinner on Saturday evening.): Adults: $225 Children: $125

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January 2018

The Mastocytosis Society – Support Group Meeting – Cape Coral, Florida

January 20, 2018 @ 10:00 am - 3:00 pm
Dance Dimensions, 922 NE 8th Street
Cape Coral, FL United States
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The Mastocytosis Society presents a support group meeting open to the public in Cape Coral, Florida. Dr. Theoharides MD, PhD is guest speaking. Be sure to RSVP to Michele Kress: [email protected]

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The Mastocytosis Society – Support Group Meeting – Minneapolis, Minnesota

January 20, 2018 @ 1:00 pm - 3:00 pm
Country Inn and Suites, 5995 Rice Creek Parkway
Shoreview, MN United States
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The Mastocytosis Society presents a support group meeting open to the public in Minneapolis, MN. Be sure to RSVP to Melissa Lovett: [email protected] [email protected]

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Patients as Partners 2nd Annual Conference – EU

January 23, 2018 - January 24, 2018
Radisson Blu Portman Hotel, STYLISH HOTEL IN CENTRAL LONDON ON PORTMAN SQUARE, NEAR OXFORD STREET 22 Portman Square W1H 7BG
London, United Kingdom
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The only conference in the Europe that provides guidance around involving patients through the process of clinical research. Industry Fees: $1,395 or ~ £1175 rates available until November 24, 2017 $1,495 or ~ £1259 rates available until December 15, 2017 $1,595 or ~ £1343 rates available until January 12, 2018 $1,695 or ~ £1427 rates available after January 12, 2018 Academia Fees: $697.50 or ~ £529 rates available until November 24, 2017 $747.50 or ~ £567 rates available until December…

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February 2018

Clinical Trials Transformation Initiative – 9th Annual SCOPE Summit – Orlando, Florida

February 12, 2018 - February 15, 2018
Hyatt Regency Orlando, 9801 International Dr, Orlando, FL 32819
Orlando, FL 32819 United States
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Clinical Trials Transformation Initiative presents the 9th annual SCOPE Summit in Orlando, Florida. This event is for clinical ops executives and will consist of a roundtable and presentations highlighting clinical trial selection, development, technology and more! Please visit HERE for pricing details and to register!  

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