Rare Disease Day US » Activities

More Happenings 2010

dsenseney — Tue, 09 Mar 2010 18:47:20 +0000

Hemophilia Federation of America

The HFA hosted an Open House in Washington DC on February 25. All were welcome to attend. Stories were shared from the bleeding disorder community. Contact m.pascucci@hemophiliafed.org for more information.

Polka Dot Day

On February 19, the Mastokids.org encouraged people to show support of Rare Disease Day and pediatric mastocytosis by wearing Polka Dots, Awareness Ribbons, and other Mastokids apparel. They are now putting together a photo collage of all participants to show support of RDD. Send photos to awareness@mastokids.org.

A Pageant Ready Day

February 28th in Ann Arbor Michigan Stephanie Hunt (Mrs. Washtenaw County America 2010 and Mrs. United States 2007) hosted a pageant preparation day to raise funds for rare disease research. The event included representatives from all aspects of the pageant world needed for a pageant win and an auction of donated items. Please contact stephanie@stephanie-hunt.com for more information.

Middle March

Lincoln Park’s National Honor Society has identified Rare Diseases as their main focus for their awareness and fund raising this year. Including selling t-shirts at an event on March 17 at the Middle March Celebration, for more information contact tinapoon08@gmail.com.

Flip-Cam Winners Are Announced

pbruno — Thu, 04 Mar 2010 16:49:06 +0000

Shire Pharmaceuticals donated five Flip-type camcorders for Rare Disease Day, one for NORD’s own purposes and four to be awarded to other patient organizations serving as Rare Disease Day Partners. NORD invited all patient organization Partners to submit brief descriptions of how they would use a camcorder.

The entries all sounded so deserving that NORD was unable to select winners so we held a drawing at a Rare Disease Day event at the University of Connecticut. A UCONN student (sophomore Liah Nelson) drew names from a bowl. The Flip-cam winners are:

Alstrom Syndrome International
ECD Global Alliance
MAGIC Foundation
Periodic Paralysis Association

Thanks to all who entered this contest. We wish we could give Flip-cams to all!

What’s Happening for Rare Disease Day?

dsenseney — Thu, 18 Feb 2010 17:24:58 +0000

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.

If You Obtain a Proclamation

pbruno — Wed, 27 Jan 2010 16:37:57 +0000

Across the U.S., members of patient advocacy groups are seeking to obtain proclamations supporting Rare Disease Day from their governors. If you obtain a proclamation or official letter from your state, please notify NORD immediately so that we can indicate this on our map.

If possible, please share news about the proclamation with any media contacts you may have in your state. (NORD will also try to notify reporters in your state, but it’s helpful if someone living in the state does so.) Feel free to provide any information from the press kit to reporters, and to include information about the specific disease or organization of interest to you. Mail the proclamation or letter to NORD so that we can display it with all the others at events during the year. (Be sure to include your name, and the organization you represent, when you send it to us.) Mail proclamations to: Information Services, NORD, PO Box 1968, 55 Kenosia Avenue, Danbury, CT 06813.

Find the Other 150

dsenseney — Thu, 05 Nov 2009 23:51:15 +0000

Fifty-four children around the world have been diagnosed with the extremely rare "rapid aging" disease, progeria. However, experts believe there are approximately 150 additional children with this disease. A global campaign has been launched to find them.

The Progeria Research Foundation has launched a global campaign to ensure that all children with progeria have access to the vital treatments and support they need as quickly as possible. All who read this story should share it with their communities. Anyone who knows a child with progeria-like characteristics should contact the Progeria Research Foundation at info@progeriaresearch.org. To learn more about progeria, its link to heart disease and normal aging, and the "Find the Other 150" campaign, go to www.findtheother150.org.

"The Rare Disease Day campaign provides a tremendous opportunity for us to find these children, who have such a similar appearance. Once people see our site, they can more easily recognize the disease," says Audrey Gordon, Executive Director of the Progeria Reserach Foundation. "So the more viral we can be, the more likely we are to find all the children."