Rare Disease Day at the RI State House:
82 Smith St, Providence, RI 02903 Second Floor
Thursday, February 27, 2020 2:30– 4:30 PM (Set up meet in handicap parking lot at 2pm)
Tables with a couple of chairs will be set up on the second floor, one on the Senate side and one on the House side. The building is handicap accessible via the entrance through the parking lot on the left side facing the front of the state house. A limited number of handicap parking spaces are in this parking lot and some are located on the street surrounding the state house. Parking can be an issue, allow for time to park, car pool if possible. Carpooling can be set up via the Facebook event page https://www.facebook.com/events/2971938849485730/ or via email.
Free up to date awareness materials about Rare Diseases and the different local organizations helping our Rhode Island Rare Disease Community will be provided. Members and family members of the various groups will be on hand to talk about what living life with a Rare Disease or disorder is like for them.
To volunteer or have your organization represented contact Krista@rieds.org
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The campaign targets primarily the general public and seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. https://www.rarediseaseday.org/article/what-is-rare-disease-day
Clothing options are unlimited, the only request is that clothing is clean and neat, if possible please wear an awareness T-Shirt about the Rare Disease you are representing with comfortable jeans/pants/skirts.
Volunteers are required to register with Krista Brack prior to the event contact Krista@rieds.org