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Events for February 28, 2019

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N4R Ham Radio Rare Disease Day Special Event

February 28

Jilly Dybka WA4CZD will be on the air February 28, 2019 with a special event ham radio callsign N4R, for Rare Disease Day. Jilly will be broadcasting from DeKalb County TN (probably from bed). She has been disabled for the past two years with two rare diseases, Ehlers-Danlos Syndrome and Dysautonomia. Tune in if you're in the Read more >

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8:00 am

Art for Angioma Alliance – online fundraising auction

February 28 @ 8:00 am - 5:00 pm

We believe that nobody should have to suffer a hemorrhage from a cavernous angioma in the brain or spinal cord and that’s why we want to raise some EXTRA AWARENESS for Rare Disease Day this year! Bid on amazing pieces of art in our virtual gallery (on Facebook) and style up your home while contributing Read more >

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RARE. Presents: Grow Awareness

February 28 @ 8:00 am - 5:00 pm
The Rivers Edge, 1064 McLean Ave.
Yonkers, NY United States
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This year, join RARE. in our first Rare Disease Day event. RARE. is hosting a Plant'n Sip event to raise funds for the National Organization for Rare Disorders.  Help us "grow" awareness and plant the seeds of the future.  100% of the proceeds from the event will go directly to NORD to promote the wellness Read more >

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8:30 am

Connecticut Rare Disease Day 2019

February 28 @ 8:30 am - 11:00 am
Legislative Office Building, 2nd floor Atrium, 300 Capitol Avenue
Hartford, CT 06106 United States
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Please join Connecticut Rare Action Network for Rare Disease Day Advocacy Event on February 28, 2019 from 8:30am-11:00am at the Connecticut State Capitol Legislative Office Building, 2nd Floor Atrium, 300 Capitol Avenue, Hartford, CT. Patients, families, caregivers, medical professionals and industry representatives are invited to attend this important event to discuss the challenges rare disease patients face and Read more >

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Rare Disease Day at NIH

February 28 @ 8:30 am - 4:00 pm
NIH – Main Auditorium, Building 45, 900 Rockville Pike
Bethesda, MD 20892 United States
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Each year, NCATS and the NIH Clinical Center (CC) sponsor Rare Disease Day at NIH as part of this global observance. This year’s global theme is “bridging health and social care(link is external).” 2019 Event Information Thursday, Feb. 28, 2019 8:30 a.m.-4:00 p.m. ET Main Auditorium, Natcher Conference Center, Building 45* National Institutes of Health Bethesda, Maryland *Note new, bigger location for 2019! Sponsored Read more >

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10:00 am

Ohio Rare Disease Day 2019

February 28 @ 10:00 am - 2:00 pm
Ohio State House, Governor Thomas Worthington Center, 1 Capitol Square
Columbus, OH 43215 United States
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Please join Ohio Rare Action Network for Rare Disease Day Advocacy Event on February 28, 2019 from 10:00am-2:00pm at the Ohio State House, Governor Thomas Worthington Center, 1 Capitol Square, Columbus, OH 43215. Patients, families, caregivers, medical professionals and industry representatives are invited to attend this important event to discuss the challenges rare disease patients face and learn how you Read more >

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11:30 am

Arizona Rare Disease Day 2019

February 28 @ 11:30 am - 2:00 pm
Arizona State Capitol, Lawn, 1700 W Washington
Phoenix, AZ 85007 United States
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During the event, advocates will have the opportunity to network with other rare disease patients, caregivers and other health care advocates. In addition, individuals will visit the Executive Office of the Governor to pick up the Rare Disease Day proclamation signed by Douglas A. Ducey. The group will attend the opening session of the afternoon Read more >

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12:00 pm

Washington Rare Disease Day 2019

February 28 @ 12:00 pm - 1:00 pm
Washington State Campus, Spokane Campus, Room SAC20, 412 E Spokane Falls Blvd
Spokane, WA 99202 United States
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Please join Washington Rare Action Network for Rare Disease Day Event on February 28, 2019 from 12:00pm-1:00pm at the Washington State Campus, Spokane Campus, Room SAC20, 412 E Spokane Falls, Blvd, Spokane, WA. Patients, families, caregivers, medical professionals and industry representatives are invited to attend this important event to discuss the challenges rare disease patients face and learn Read more >

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1:00 pm

Oklahoma Rare Disease Day 2019

February 28 @ 1:00 pm - 3:30 pm
Oklahoma State Capitol, 4th Floor Rotunda, 2300 N. Lincoln Blvd
Oklahoma City, OK 73105 United States
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Thursday, February 28, 2019 from 1:00pm-3:30pm Oklahoma State Capitol, 2300 N. Lincoln Blvd, 4th Floor Rotunda Oklahoma City, Oklahoma 73105 Please join patients, families, caregivers, medical professionals and industry representatives at this important event to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare Read more >

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3:00 pm

Inaugural Rare Disease Day NYC Honoring Patients & Families

February 28 @ 3:00 pm - 7:00 pm
Alexandria Center for Life Science, 450 East 29th Street
New York, NY 10016 United States
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Rare Disease Journeys Come here from patients and family members living with a rare disease diagnosis, including Danon Disease, Fanconi Anemia, Primary Immune Deficiency and Spinal Muscular Atrophy (SMA). Discussion: 3:30 - 5:00p.m. Networking Reception: 5:00 - 7:00p.m.   RSVP to AlexandriaEvents@are.com

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6:00 pm

Maryland Rare Disease Day 2019

February 28 @ 6:00 pm - 8:00 pm
Bernard W. Brown Community Center, 629 N. Market Street
Frederick, MD 21701 United States
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Please join Maryland Rare Action Network for Rare Disease Day Advocacy Event on Thursday,February 28, 2019 from 6:00pm-8:00pm at Bernard W. Brown Community Center, 629 N. Market Street, Frederick, MD 21701. Patients, families, caregivers, medical professionals and industry representatives are invited to attend this important event to discuss the challenges rare disease patients face and learn how you can Read more >

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6:30 pm

Swing for The Kids 2019

February 28 @ 6:30 pm - 9:30 pm
TopGolf, Scottsdale, 9500 Talking Stick Way
Scottsdale, AZ 85256 United States
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$175

The Crain Family Foundation is hosting our third annual Swing fore the Kids Fundraising event at Topgolf! Meet and play with major league baseball players, past and present, fans, family and friends already here for Spring Training, enjoy great food, drinks, and company, AND support an amazing cause! Our event will be held on Thursday, February 28, Read more >

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