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Events

Click your the map above to view what is happening in your state for Rare Disease Day 2015.

Tell us about the event(s) you are planming through our event form.

Alabama

If you would like to help us organize an advocacy event in this state, sign-up here.

Alaska

If you would like to help us organize an advocacy event in this state, sign-up here.

Arizona

If you would like to help us organize an advocacy event in this state, sign-up here.

Arkansas

If you would like to help us organize an advocacy event in this state, sign-up here.

California

There is a State House Event being planned for California. Date and time will be determined in January once the California legislative calendar is posted. If you would like to help collaborate on this event, sign-up here.

Event: 6th Annual Sanford-Burnham Rare Disease Day Symposium; Doctor-is-in-Session
Organization: Sanford-Burnham Medical Research Institute
Contact Name: Amy Zimmon
Email: azimmon@sanfordburnham.org
Event Address: 10901 North Torrey Pines Road, La Jolla, California 92037
Event Date: 2/28/2015
Description: Simple sugars can treat patients with rare diseases, but these supplements can also impact aging, immune function, and development of diabetes. In this innovative half-day session, patients and their advocates are given the opportunity to interact with a variety of researchers and clinicians in an intimate, collaborative environment. For more information about the Sanford-Burnham Rare Disease Day “Doctor-Is-In” session, please see event website.

Colorado

Colorado Rare Disease Day State House Event
Thursday, February 26, 2015
State Capitol Building
200 East Colfax Avenue, Denver, Colorado 80203
7:30 AM – 9:00 AM
If you would like to register for this event, sign-up here.

Connecticut

Connecticut Rare Disease Day State House Event
Wednesday, February 25, 2015
State Capitol Building
210 Capitol Avenue, Hartford, Connecticut
10:00am-12:00pm
If you would like register for this event, sign-up here.

Event: Rare Diseases Awareness Event 2015
Organization: UCONN School of Medicine, Disabilities Interest Group
Contact Name: Sophia Walker
Email: sowalker@uchc.edu
Event Address: 263 Farmington Avenue, Farmington, Connecticut 06269
Event Date: 2/25/2015
Description: The UCONN School of Medicine Disabilities Interest Group is hosting the Rare Diseases Awareness Event on the evening of February 25th at the University of Connecticut Health Center. Join us in celebrating individuals who have rare diseases and the many researchers and physicians who are fighting to find cures for these conditions. Listen to patients, doctors, and students share their experiences and learn about rare diseases! Admission is free and refreshments will be provided. Everyone is welcome! If you are interested in speaking, would like more information, or have any questions, please contact us!

Delaware

If you would like to help us organize an advocacy event in this state, sign-up here.

Event: Nemours Rare and Chronic Disease Research Event
Organization: Nemours Alfred I. duPont Hospital for Children
Contact Name: Terry Pedicone
Email: Terry.Pedicone@Nemours.org
Event Address: Anthony N. Fusco, Sr. Atrium – Nemours Alfred I. duPont Hospital for Children, 1600 Rockland Road, Wilmington, DE 19803
Event Date: 2/27/2015, 10:00AM – 2:00PM
Description: This event is designed to encourage Delaware health science students to become involved in research and the medical field – to educate the next generation of health care professionals. Students will partner with researchers, clinicians, healthcare professionals, patients and families, to learn about and define a rare disease and the health care needs in the community. Health Occupations Students of America (HOSA) is a national student organization that provides a unique program of leadership development, motivation, and recognition exclusively for secondary, post secondary, collegiate, and adult students enrolled in health science education. Eight teams (two students per team) will develop a visual display of a specific rare disease with a proposed cure/treatment or way to improve quality-of-life issues related to their chosen rare disease. A select panel of Nemours Associates will judge the HOSA students’ competitive entries and awards will be presented.

District of Columbia

If you would like to help us organize an advocacy event in this state, sign-up here.

Event: Rare Disease Events on Capitol Hill
Organization: Rare Disease Legislative Advocates
Contact Name: Andy Russell
Email: arussell@everylifefoundation.org
Event Address: First Street SE, Washington, DC 20515
Event Date: 2/23/2015 – 2/27/2015
Description: Join RDLA and more than 200 rare disease patient advocates for events in DC dedicated to empowering patients, families and friends to become legislative advocates. You will have the opportunity to meet with your Members of Congress, network with government leaders and learn best practices for successful advocacy. You must be registered, however there is NO cost to attend any of the events and there are travel scholarships available.

Monday, Feb 23 – Rare Disease Documentary Screening and cocktail reception
Tuesday, Feb 24 – Rare Disease Legislative Conference
Wednesday, Feb 25 – Rare Disease Lobby Day on Capitol Hill
Thursday, Feb 26 – Rare Artist Recption in Rayburn House Office Building
Friday, Feb 27 – Rare Disease Day @ NIH

Florida

Florida Rare Disease Day State House Event
Tuesday, February 24, 2015
State Capitol Building
400 South Monroe Street, Tallahassee, FL 32399
9:00am-11:00am
If you would like register for this event, sign-up here.

Event: Walk Against Rare Diseases
Organization: Guardian Hands Foundation
Contact Name: Grace Loeb
Email: grace.loeb@gmail.com
Phone: 305-321-6961
Event Address: Westland Gardens Park, 13501 N.W. 107th Avenue, Hialeah Gardens, Florida 33018
Event Date: 2/28/2015 (7:00 AM – 11:30 AM)
Description: Join us for the 2nd Annual Walk Against Rare Diseases. Walk to raise awareness and to make a difference in the life of those affected by rare diseases.

Georgia

Georgia Rare Disease Day State House Event
Friday February 27, 2015
State Capitol Building
206 Washington Street Southwest, Atlanta, GA 30334
12:30pm-2:30pm
If you would like to register for this event, sign-up here.

Hawaii

If you would like to help us organize an advocacy event in this state, sign-up here.

Idaho

If you would like to help us organize an advocacy event in this state, sign-up here.

Illinois

If you would like to help us organize an advocacy event in this state, sign-up here.

Indiana

An information table and exhibit is being planned at the Indiana state capitol building on Tuesday February 17, 2015, for more information, sign-up here.

Event: Rare Disease Day Celebration
Organization: Boler Parseghian Center for Rare and Neglected Diseases
Contact Name: Barbara Calhoun
Email: bcalhoun@nd.edu
Event Address: University of Notre Dame McKenna Hall, Notre Dame Avenue, Notre Dame, Indiana 46556
Event Date: 2/13/2015 – 2/14/2015
Description: The Boler Parseghian Center for Rare and Neglected Diseases at the University of Notre Dame will have Rare Disease Day celebrations on Feb. 13th and Feb. 14th, 2015. Friday’s event will be video live streamed and have Notre Dame Researchers presenting a brief summary of their rare disease research and findings. Ebola, NonKetotic Hyperglycinemia, Niemann PickType C and other rare and neglected disease research will be presented. Saturday will be a Rare Disease Day celebration! We welcome everyone and our event will include presentations and discussion panels on a variety of rare disease topics – the focus of this event is on the clinician, caregiver, patient and family perspectives.

Iowa

If you would like to help us organize an advocacy event in this state, sign-up here.

Kansas

An information table and exhibit is being planned at the Kansas state capitol building, date is still being determined, for more information, sign-up here.

Kentucky

If you would like to help us organize an advocacy event in this state, sign-up here.

Louisiana

If you would like to help us organize an advocacy event in this state, sign-up here.

Maine

If you would like to help us organize an advocacy event in this state, sign-up here.

Maryland

If you would like to help us organize an advocacy event in this state, sign-up here.

Massachusetts

Massachusetts Rare Disease Day State House Event
Date: Monday, February 23, 2015
Time 11:00 AM to 12:00 PM (EST)
Location: Massachusetts State House
24 Beacon Street
Great Hall
Boston, MA 01233
Pre-registration for this free event is requested, but not required: sign-up here.

Michigan

Michigan Rare Disease Day State House Event
Thursday, February 26, 2015
State Capitol Building
Capitol Avenue at Michigan Avenue, Lansing, MI 48933
11:00am-12:00pm
To register for this event, sign-up here.

Event: Rare Disease Day Mystery Dinner
Organization: WAGR Warriors
Contact Name: Lindsay Kandow
Email: wagrwarriors@gmail.com
Event Address: MacRay Harbor, 30675 North River Road, Michigan Harrison Township, Michigan
Event Date: 2/28/15
Description: In celebration of Rare Disease Day, the WAGR Warriors is hosting a Mystery Dinner to support and raise awareness of rare diseases like WAGR/11p deletion syndrome. The Mystery Dinner will be at MacRay Harbor in Harrison Township.

Minnesota

Minnesota State House Event
Tuesday, February 24, 2015
State Capitol Building
Room 400 North
5 Rev Dr Martin Luther King Junior Boulevard., Saint Paul, MN 55155
10:30am-12:00pm
If you would like register for this event, sign-up here.

Mississippi

If you would like to help us organize an advocacy event in this state, sign-up here.

Missouri

Missouri Rare Disease Day State House Event
Wednesday, February 25, 2015
State Capitol Building
201 West Capitol Avenue, Jefferson City, MO 65101
Time: TBD
If you would like to register for this event, sign-up here.

Montana

If you would like to help us organize an advocacy event in this state, sign-up here.

Nebraska

Nebraska Rare Disease Day State House Event
Monday, February 23, 2015
State Capitol Building
1445 K Street, Lincoln, NE 68508
12:00pm-1:00pm
If you would like register for this event, sign-up here.

Nevada

An information table and exhibit is being planned at the Nevada state capitol building on February 25, 2015. For more information sign-up here.

New Hampshire

An information table and exhibit is being planned at the New Hampshire state capitol building date is still being determined. For more information , sign-up here.

New Jersey

A New Jersey Rare Disease Day State House Event is currently being planned.
If you would like to help collaborate on this event, sign-up here.

Event: Crate Expectations
Organization: Autoinflammatory Alliance
Contact Name: Carla Herbert
Email: planterofhope01@yahoo.com
Event Address: 322 Somerset Street, Gloucester City, New Jersey 08030
Event Date: 2/9/2015
Description: The Autoinflammatory Alliance is pleased to announce a new program for children with autoinflammatory diseases. Crate Expectations is a care package program in which we support our community members by sending unique care packages that will contain items intended to uplift and encourage. Items will vary but may include activities/crafts, lip balms/chapstick, hats and gloves, and a few other feel good items. For more information, please use the contact form located here.

New Mexico

An information table and exhibit is being planned at the New Mexico state capitol building on March 2, 2015. For additional information, sign-up here.

New York

New York Rare Disease Day State House Event
Tuesday, March 3, 2015
State Capitol Building
State St. and Washington Ave, Empire State Plaza, Albany, NY 12224
10am-12pm
If you would like register for this event, sign-up here.

Event: Painting for a Cause
Organization: Orphan Drug Solutions
Contact Name: Lisa Skrezec
Email: LisaS@orphandrugsolutions.com
Event Address: 721 Hawkins Avenue, Lake Ronkonkoma, New York 11779
Event Date: 2/28/2015
Description: We will be hosting our inaugural “Painting for a Cause” event at the Crazy Crepe Cafe. The $45 ticket includes everything you will need for the event. The Paint Nite artist will instruct us every step of the way, so all artistic levels are welcome. All proceeds from tickets and raffles will be donated to Cullen’s Crusaders Against ALS, a Long Island based ALS non profit organization. There will be a 50/50 raffle and everything from skydiving vouchers, wine tasting baskets, indoor trampoline passes, to gluten-free truffles. Buy tickets here.

North Carolina

North Carolina Rare Disease Day State House Event
Wednesday, February 18, 2015
State Legislative Building
16 West Jones Street, Raleigh, NC 27601
7:30am-8:30am
If you would like to register for this event, sign-up here.

North Dakota

If you would like to help us organize an advocacy event in this state, sign-up here.

Ohio

Ohio Rare Disease Day State House Event
Wednesday, February 18, 2015
State Capitol Building
1 Capitol Square, Columbus, Ohio 43215
7am-9am in the Museum Gallery
If you would like to register for this event, sign-up here.

Oklahoma

Oklahoma Rare Disease Day State House Event
Monday, February 23, 2015
State Capitol Building
2300 North Lincoln Boulevard, Oklahoma City, OK
10:00am-12:00pm
If you would like to register for this event, sign-up here.

Oregon

Oregon Rare Disease Day State House Event is currently being planned in Oregon. If you would like to collaborate on the planning of this event, sign-up here.

Pennsylvania

Pennsylvania Rare Disease Day State House Event
Tuesday, February 24, 2015
State Capitol Building
North 3rd Street, Harrisburg, PA 17120
11:30am-1:30pm
If you would like register for this event, sign-up here.

Rhode Island

If you would like to help us organize an advocacy event in this state, sign-up here.

South Carolina

South Carolina Rare Disease Day State House Event
Thursday, February 26, 2015
State Capitol Building
1100 Gervais Street, Columbia, SC 29201
Time: TBD
If you would like to register for this event, sign-up here.

South Dakota

If you would like to help us organize an advocacy event in this state, sign-up here.

Event: 5th Annual Sanford Rare Disease Symposium
Organization: Sanford Research
Contact Name: Catie Olson
Email: Catherine.Olson@sanfordhealth.org
Event Address: Sanford Center, Dakota Room, 2301 E 60th Street North Sioux Falls, South Dakota, 57104
Event Date: 2/27/2015
Description: Sanford Research is hosting its 5th Annual Sanford Rare Disease Symposium. Register here.

Tennessee

A Tennessee Rare Disease Day State House Event is currently being planned. If you would like to collaborate on the planning of this event, sign-up here.

Texas

Texas Rare Disease Day State House Event
Saturday, February 28, 2015
State Capitol Building
1100 Congress Avenue, Austin, Texas
1:00pm-3:00pm
If you would like to register for this event, sign-up here.

 

The Sugar Shindig
Organization: Congenital Hyperinsulinism International
Contact Name: Julie Raskin
Email: jraskin@congenitalhi.org
Event Address: The Lone Star Court Hotel, 10901 Domain Drive, Austin, Texas 78758
Event Date: 2/28/2015
Description: Congenital Hyperinsulinism International will be holding the inaugural Sugar Shindig in support of patients living with congenital hyperinsulinism (HI). The CHI Sugar Shindig will emphasize the importance of patient families, academic centers, physicians, and members of the health care industry working toward a bright future for children and adults living with HI. Subjects of the event will cover the challenges of living with this rare condition, progress toward the development of better treatments, and support initiatives for patients and their families. Dr. Paul Thornton, Director of the Hyperinsulinism Center at Cook Children’s Medical Center and one of the world’s leaders in HI research and clinical work, will headline the evening with a talk on this condition. To make a donation or purchase tickets, click here.

Utah

Utah Rare Disease Day State House Event
Friday, February 27, 2015
State Capitol Building
350 North State Street, Salt Lake City, UT 84114
3:00pm-5:00pm
If you would like to register for this event, sign-up here.

Utah Rare Disease Day Symposium
Utah Rare
Saturday, February 28, 2015
from 12:00 PM to 5:00 PM (MST)
Salt Lake City, UT
sign-up here.

Vermont

If you would like to help us organize an advocacy event in this state, sign-up here.

Virginia

A Virginia Rare Disease Day State House Event is currently being planned. If you would like to collaborate on the planning of this event, sign-up here.

Washington

Washington State Rare Disease Day State House Event
Wednesday, February 25, 2015
State Capitol Building
215 Sid Snyder Avenue Southwest, Olympia, WA 98501
3:00pm-5:00pm
To register for this event, sign-up here.

West Virginia

If you would like to help us organize an advocacy event in this state, sign-up here.

Wisconsin

Rare Disease Day at Wisconsin State House
Friday, February 27, 2015
2 East Main Street, Madison, WI 53703
8:00am-12:00pm
If you would like to register for this event, sign-up here.

Wyoming

If you would like to help us organize an advocacy event in this state, sign-up here.