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 […]

California Rare Action Network Rare Disease Day 2020 Sunday, March 1 at 12:30pm Los Angeles Clippers present NORD as Non-Profit of the game at the Staples Center, 1111 S Figueroa Street, Los Angeles, CA 90015 Tickets are available for $70 and a portion of the proceeds will go directly to help NORD fight rare diseases. […]

Arkansas Rare Action Network Rare Disease Day Saturday, February 29, 2020 Arkansas College of Osteopathic Medicine,  7000 Chad Colley Blvd, Fort Smith, AR 72916 Please join patients, families, caregivers, medical professionals and industry representatives at this important event to learn about the challenges rare disease patients face and learn how you can make a difference […]

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 […]

Saturday, February 29, 2020 from 11:00am – 2:30pm  Science Museum of Oklahoma, 2020 Remington Pl, Oklahoma City, OK Join us at the Science Museum of Oklahoma on the Rarest Day of the Year (February 29th) to celebrate people with rare disorders and advocate on their behalf at Rare Disease Day 2020. Rare Disease Day is […]

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 […]

Friday, February 28, 2020 from 9:30am – 12:30pm Omni Parker House, 60 School Street, Boston, MA 02108 The last day of February has been designated as Rare Disease Day in Massachusetts to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world. […]

The Rare Disease Treatment Approval Process: Balancing Gold Standard Evidence with Patient-Centered Flexibility Friday, February 28, 2020 from 9:00 a.m. – 2:30 p.m. McNamara Alumni Center, 200 SE Oak St, Minneapolis, MN 55455 Keynote: Sarah Wicks, JD, MPH Sarah Wicks is an associate at Hyman, Phelps & McNamara, P.C. where she works with sponsors to […]