Archives

Wednesday, March 4, 2020 from 6:00pm – 8:00pm  The Pollard Library, 401 Merrimack St, Lowell, MA 01852 Massachusetts Rare Action Network invites you to connect with patients, families, caregivers, medical professionals and all stake holders at this important event to learn about the challenges rare disease patients face and learn how you can make a […]

Illinois Rare Disease Day Wednesday, March 4, 2020 from 9:00am-12:00pm State House Inn, 101 E Adams St, Springfield, IL 62701 Join patients, families, caregivers, medical professionals and industry representatives at this important event to discuss with Illinois Legislators the challenges rare disease patients face and learn how you can make a difference in the lives […]

Wisconsin Rare Disease Day 2020 Saturday, February 29, 2020 from 12:00pm-3:00pm Gardner Room” at the Wehr Nature Center, 9701 W. College Avenue, Franklin, WI 53132 There is no cost to participants to attend this event. Wisconsin Rare Action Network invites you to join patients, families, caregivers, medical professionals and industry representatives at this important event […]

Rare Disease Day Lunch at the Common Man Restaurant  Saturday, February 29, 2020 from 11:00am-2:00pm The Common Man Restaurant, 25 Water St, Concord, NH 03301 There is no cost to participants to attend this event. Please join us for lunch and connect with other patients, families, caregivers, medical professionals, industry representatives and state legislators at […]

Tucson, Arizona Rare Disease Day Saturday, February 29, 2020 Brought to you by MECP2 Duplication Foundation and Arizona Rare Action Network Tuscon Children’s Museum, 200 S 6th Ave, Tucson, AZ 85701 Join patients, families, caregivers and all rare disease stake holders at this fun family friendly event to learn about the challenges rare disease patients […]

Friday, February 28, 2020 at the Georgia State Capitol, 206 Washington Street SW, Atlanta, GA. Join patients, families, caregivers, medical professionals, industry representatives and state legislators 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 disease patients and their families […]

Colorado Rare Disease Day 2020 Presented by Colorado Rare Action Network and Colorado Rare Thursday, February 27, 2020 from 8:30am-2:00pm Colorado State Capitol Building, 2nd Floor West Foyer 200 E Colfax Ave, Denver, CO 80203. patients, families, caregivers, medical professionals and industry representatives at this important event to educate Colorado legislators on the challenges rare […]

Rare Disease Day Advocacy Event at the State Capitol Wednesday, February 19, 2020 from 11:00am-2:00pm New Hampshire State House, Cafeteria 107 N Main St, Concord, NH 03303 There is no cost to participants to attend this event. Please join patients, families, caregivers, medical professionals and industry representatives at this important event to discuss with New […]

Washington, D.C., June 4, 2018 — The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on the increasing use of copay accumulator programs in health plans: “Recently, a number of health plans have started implementing, what are broadly known as, ‘copay […]

As members of our South Carolina and North Carolina Rare Action Network, we hope you can join us for one of our upcoming Rare Action Network (RAN) Luncheons. These are free meetings that will give you the opportunity to connect, learn, and share with other rare disease advocates. More details are listed below. Together, we can make a [...]