Rare Disease Day is a grassroots awareness effort, with events and activities taking place across the U.S. and online. Many people are seeking proclamations from their state governors. An Advocacy Day is planned in Washington DC. Supporters of Rare Disease Day are being urged to wear jeans by the Global Genes Project. Pre-medical students at the University of Connecticut will sponsor a campus awareness event.
Uplifting Athletes Advocacy Day
Uplifting Athletes is sponsoring an Advocacy Day in Washington DC on Friday, Feb. 26. All are invited. Meet between 9 and 10 a.m. at 818 North Quincy Street, Arlington, VA. Brief presentations. Following lunch (on your own) the group will travel together via the Metro to Capitol Hill. Topics of special interest: Insurance Caps and Newborn Screening. Information.
Wear Your Jeans on Rare Disease Day
The Global Genes Project urges everyone to wear jeans on, and during the week leading up to, Rare Disease Day. Information.
Discovery Health to Air Show Based on Dr. Gahl and NIH Program
Discovery Health TV will air the world premiere of “Disease Detectives”, a show based on the real-life experiences of William Gahl, MD, and the NIH Undiagnosed Diseases Program. View promo.
University of Connecticut
The Pre-Medical Students Club of the University of Connecticut is hosting an educational event on rare diseases in the Student Union Building on the UConn main campus at Storrs, CT., from 11 a.m. to 1 p.m. on Sunday, Feb. 28. A NORD representative will speak, as well as students affected by rare diseases.
Children’s Hospital Boston Lobby Display
Meghan Connolly of The Manton Center for Orphan Disease Resesarch (Children’s Hospital Boston) has created a paper link chain with names of more than 350 rare diseases that do not currently have ongoing clinical trials. The chain is over 60 feet long and will be hung during the week before Rare Disease Day in the main lobby of Children’s Hospital Boston.
Raise Your Hand
Lundbeck Inc. launched a Raise Your Hand campaign to raise funds for research. Each time anyone clicks on the symbol, Lundbeck donates $1 to NORD’s general research fund, up to a total of $10,000. (This fund provides grants for study of diseases for which little or no other funding is available.) You can find the campaign right here on our home page.
Open House at NORD’s Danbury Offices
NORD will host an open house (all are invited) at its offices at 55 Kenosia Avenue, Danbury, CT, from 3 to 6 p.m. on Friday, Feb. 26. Displays will include a gallery of patient stories and photos submitted to NORD for Rare Disease Day. Tour the office. Meet the staff.
Flip Cam
Shire Pharmaceuticals has donated five “Flip-cams” to NORD, one for NORD’s own educational purposes and four to award to Rare Disease Day Partners in a contest. Patient organizations are invited to send a brief description of how they would use one of these camcorders to rarediseaseday@rarediseases.org to be included in this contest. Winning entries will be announced just before Rare Disease Day.
Research Hall of Fame to Launch
Rare Disease Day Partners have been nominating their favorite researchers to the Research Hall of Fame for 2010. The Hall of Fame will be launched just before Rare Disease Day. Information.
ViroPharma Lunch & Learn
ViroPharma Inc. has planned a Lunch & Learn for employees and guests at its offices near Philadelphia on Wednesday, Feb. 24. A NORD representative will speak about the needs of patients and families.
Rare Disease Day Open House in Michigan
The 2nd Annual Open House celebrating Rare Disease Day is set for Feb. 27 and jointly sponsored by MOPIXTV and Grand Traverse Area Library for Blind and Physically Handicapped. Open to all. Music. Refreshments. Michigan authors. Location: 813 Napolean Way, Traverse City, MI. Information: Sharon@mopixtc.com.
International Castleman’s Disease Organization Video Launch
The International Castleman’s Disease Organization (ICDO) will launch video footage from the 2009 International Castleman’s Disease Summit and host a live online event featuring a global panel of patients and physicians discussing diagnosis, treatment and management of Castleman’s disease.
Celebration of Hope
Genzyme Corporation will host an event called “Celebration of Hope” on the evening of Thursday, Feb. 25, at which it will launch an exhibit of artwork created by lysosomal storage diseases patients. The exhibit, “Expression of Hope II”, shares what it’s like to live with a lysosomal storage disease. A NORD representative will speak.
Glanzmann’s Research Foundation Awareness Day
On Sunday, Feb. 28, Glanzmann’s thrombasthenia patients and families will post information about GT and Rare Disease Day on the CureGT.com website and on their Facebook and Twitter pages. Send submissions to CureGT@comcast.net.
Stiff Person Syndrome Awareness
A member of the Stiff Person Syndrome Association plans to sit in front of her local Wal-Mart in Oklahoma with a sign providing information to all passersby about stiff person syndrome and Rare Disease Day.
Students Take on Rare Disease, One Jean Ribbon at a Time
More than 100 4-Hers will listen to Dr. Joy Sturtevant of Louisiana State University Health Sciences Center discuss biology, genes and genetics. (Dr. Sturtevant participated in 4-H as a child in New York.) The 4-Hers will make jean ribbons to wear and share for World Rare Disease Day. Information: hellocalhouns@bellsouth.net.
Mastocytosis Society Honors Rare Disease Day
The Mastocytosis Society has included information about mastocytosis in letters sent by its members to their state governors requesting Rare Disease Day proclamations. In addition, the society will provide free copies of its video, “Mast Cell Activation Symptomatology”, so that patients and families may take the video to their physicians. Information.
BioMarin
BioMarin Pharmaceutical Inc. will be sponsoring its 2nd Annual Rare Disease Day Celebration on Thursday, Feb. 25 in Novato, CA. The special events planned include the grand opening of the company’s new state-of-the-art manufacturing facility and a reception honoring patients living with rare diseases. A NORD representative will participate.
Sanford Burnham Institute
The Sanford-Burnham Medical Research Institute in San Diego will host the 1st Annual Sanford-Burnham Symposium on Rare Diseases: Collaborations that Drive Discovery, Therapy and Advocacy from 8:30 a.m. to 6:30 p.m. on Friday, Feb. 26. Details.
Alexion
Alexion Pharmaceuticals will host a Lunch & Learn for its staff, patients and families on Friday, Feb. 26. A NORD representative will speak.
Cushing Support and Research Foundation
The Cushing’s Support and Research Foundation is hosting its 2nd Annual Cushing Patient Awareness and Education Day on Saturday, Feb. 27, at the Marriott San Mateo in San Francisco. Several medical experts will speak. Details.
Radio Media Tour
A series of live radio interviews will take place on Friday, Feb. 25, to raise awareness across the U.S. of Rare Disease Day and why rare diseases are an important public health issue. A NORD Board member will speak.
Michigan State Medical Students to Launch Survey
Just before Rare Disease Day, four medical students at Michigan State University Medical School will launch a survey to provide updated information on perceptions of rare disease patients and families. Watch for additional information soon.
