Hospitality Suite and Relaxation Room. Foyer Vascular EDS Discussion Group Key Ballroom 12

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1 Thursday, July 14, noon 4:00 1:30 2:30 pm 3:00 4:00 pm 4:00 5:00 pm 3:00 5:00 pm 5:00 7:00 pm Registration Hospitality Suite and Relaxation Room Exhibits on Display Armistead & Pickersgill Vascular EDS Discussion Group 12 Vascular EDS Rarer Types EDS Junior Zebras programming (See page 9 for more details) Dr. Peter Byers Welcome Reception with Exhibitors Sponsored by Bauerfeind Dr. Clair Francomano and 4 Friday, July 15, :30 am 6:00 pm 8:00 am 5:10 pm 8:15 8:30 am 8:30 9:30 am 9:35 10:35 am 10:35 11:05 am 11:05 am 12:05 pm Registration Visit with Exhibitors Hospitality Suite and Relaxation Room Junior Zebras programming (See page 9 for more details) Welcome and Introduction Classical EDS Hypermobile EDS Dr. Clair Francomano Dr. Howard Levy Morning Break and Visit with Exhibitors Sponsored by EDSawareness.com and New York Institute of Technology The Natural History of Hypermobile EDS Prof. Rodney Grahame Armistead & Pickersgill 3 and 4

2 12:05 1:30 pm 1:35 2:35 pm 2:35 3:05 pm 3:05 4:05 pm 4:10 5:10 pm 5:30 Lunch & Oral Manifestations of EDS Sponsored by Silver Ring Spllints Orthopaedic Issues in EDS Dr. John Mitakides Dr. William Ericson Afternoon Break and Visit with Exhibitors Sponsored by EDSawareness.com and New York Institute of Technology Gastrointestinal Involvement in EDS Physiotherapy Management and Care Roundtable Discussion: Young Adults 7:00 pm Issues with My Tissues (Director s Cut) Prof. Qasim Aziz Dr. Leslie Russek Lara Bloom 12 Saturday, July 16, :30 am 3:00 pm 8:00 am 3:00 pm 8:00 8:15 am 8:15 9:15 am 9:20 10:20 am 10:20 10:50 am 10:50 11:50 am Registration Visit with Exhibitors Hospitality Suite and Relaxation Room Junior Zebras programming (See page 10 for more details) Welcome and Announcements Neurology in EDS Pain in EDS Dr. Fraser Henderson Dr. Pradeep Chopra Morning Break and Visit with Exhibitors Sponsored by EDSawareness.com and New York Institute of Technology Autonomic Dysfuction and Chronic Fatigue in EDS Dr. Alan Pocinki Armistead & Pickersgill 3 and 4

3 11:55 am 12:55 pm 1:00 2:00 pm 2:00 3:00 pm 4:30 Zebra Rally Mast Cell and Allergy in EDS Networking Lunch Dr. Anne Maitland Discussion Groups (Limited capacity, first-come, first-served) Classical EDS 10 Parents 11 Spouses/Caregivers 12 Zebra Rally 1. About 4:00 pm, exit Hilton and turn right (heading east) on Pratt St. 2. Continue on Pratt and cross Light St. 3. Walk across plaza (fountain on right) and cross street. 4. Rally is between the shopping malls, near the harbor s edge. The trip takes under 15 minutes. Rally begins at 4:30 pm. For Google Map directions, visit The rally will be attended by people living with EDS from around the globe, as well as their families and friends. Local elected officials and key EDS medical experts will be present to make remarks, and several EDS patients will share their stories. W. LOMBARD W. PRATT HOPKINS S. HANOVER E. PRATT S. CALVERT SOUTH ST. COMMERCE HILTON W. CAMDEN CAMDEN YARDS CONV. CTR. RAIL S. HOWARD S. SHARP W. CONWAY S. CHAR:LES LIGHT ST. FOUNTAIN USS CONSTELLATION HARBOR NATIONAL AQUARIUM

4 Junior Zebras Kids Program in 3 Teens Program in 4 Thursday, July 14, :00 3:30 pm 3:30 5:00 pm 5:00 7:00 pm Introductions and Icebreaker Game Picture and Video Scavenger Hunt and EDS Awareness Video Planning Welcome Reception with family ( ) Introductions and Icebreaker Game Picture and Video Scavenger Hunt and EDS Awareness Video Planning Friday, July 15, :00 8:50 am 9:00 9:50 am 10:00 10:35 am 10:35 11:05am 11:05 am 12 noon 12:05 1:30 pm 1:35 2:35pm 2:35 3:05 pm Coping Tips with Doctors and Medical Procedures Brittany Krauth, Certified Child Life Specialist, Johns Hopkins Children s Center Rehearsal for EDS Awareness Video Circle Time Q&A Discussion Morning Break with family ( ) EDS-Appropriate Movement Kathy Zonarich, PT Advocating Through Social Media Shira Strongin, Creator of Sick Chicks Coping Tips with Doctors and Medical Procedures Brittany Krauth, Certified Child Life Specialist, Johns Hopkins Children s Center Rehearsal for EDS Awareness Video Group Q&A Discussion Lunch and General Session (with family, ): Oral Manifestations of EDS, Dr. John Mitakides Making Invisible Illnesses Visible Victoria Graham, Miss White Oak 2016 Afternoon Break with family ( ) EDS-Appropriate Movement Kathy Zonarich, PT

5 3:05 4:00 pm 4:00 4:50 pm 4:50 5:10 pm Picture and Video Scavenger Hunt (continued) Ask an EDS Expert Dr. Heidi Collins Circle Time Raising Awareness in Our Communities and Advocating in Our Government Lara Bloom and Shane Robinson CAE, Co-Executive Directors of The Ehlers-Danlos Society Picture and Video Scavenger Hunt (continued) Group Discussion Saturday, July 16, :00 8:50 am 9:00 9:50 am 9:50 10:20 am 10:20 10:50 am 10:50am 12 noon 12 noon 1:00 pm 1:00 2:00 pm Yes We Are Zebras, but We Still Have a Voice Clara Lemarr, CEO Founder of The Clara Lemarr Foundation Circle Time Discussion Final Rehearsal for EDS Awareness Video Morning Break with family ( ) Filming the EDS Awareness Video Scavenger Hunt Wrap-Up Networking Lunch with family ( 5 8) 2 3:00 pm Junior Zebra Party (Third floor, Tubman) 4:30 Zebra Rally with family Ask an EDS Expert Dr. Heidi Collins Yes We Are Zebras, but We Still Have a Voice Clara Lemarr, CEO & Founder of The Clara Lemarr Foundation Group Q&A Discussion Scavenger Hunt Wrap-Up and Final Rehearsal for EDS Awareness Video Filming the EDS Awareness Video Junior Zebra Party (Third floor, Carroll)

6 ATM ESCALATOR STAIRS ELEVATOR RESTROOMS Registration Hospitality Suite/Relaxation Room Armistead/Pickersgill All sessions Junior Zebras (Kids) Saturday Party, 2-3 pm Tubman Junior Zebra (Teens) Saturday Party, 2-3 pm Carroll Vascular EDS Discussion Group (Thursday) Discussion Groups (Saturday): Classical EDS Parents Spouses/Caregivers KeyBallroom 12 TUBMAN CARROLL FLOOR 3 WEST N KEY BALLROOM FOYER REGISTRATION DESK FLOOR 2 KEY BALLROOM 5-8 WEST N JIMMY JOHN S N PICKERSGILL ARMISTEAD C B PEALE EAST JOHNSON B A A DIAMOND TAVERN RUTH LATROBE Schedule and room assignments may change MAIN ENTRANCE - PRATT STREET 5 LOBBY BAR 1 GIFT SHOP FLOOR 1 WEST CAMDEN STREET PARKING GARAGE