Rare Disease Day Partner

Raise Your Hand for Rare Disease Research!

Lundbeck Inc., a Rare Disease Day Partner, this morning announced the launch of a campaign to raise funds for rare disease research in conjunction with Rare Disease Day.  Lundbeck has created a “Raise Your Hand” symbol that can be posted on websites and Facebook and Twitter pages.  For each click on this symbol, Lundbeck will donate $1—up to a total of $10,000—to NORD’s general research fund.  This fund is used to “top off” restricted research funds that are very close to the amount required to fund a grant.  (NORD has restricted research funds for many rare diseases.  When donations to any fund reach $35,000, a request for proposals is issued and NORD’s Medical Advisory Committee selects a study to fund and reviews all researchers’ reports to ensure integrity of the research.)  The Raise Your Hand campaign is intended to raise awareness of the need for more research on rare diseases, which is a major theme of Rare Disease Day 2010.  You can support this campaign by posting the symbol, by sharing it with friends…and, of course, by clicking on it!    
 

The Faces of Rare Diseases:  Collin’s Story 

Imagine having a disease so rare that only a couple dozen cases are reported in the medical literature.  One of those “cases” is Collin, whose positive outlook and friendly nature have helped him overcome the odds and excel, despite having to cope with a difficult medical condition.  Collin has a condition known as “arterial tortuosity syndrome” and his physician happens to be one of the experts honored in the 2009 Rare Disease Research Hall of Fame.  Read the story submitted by Collin’s mother. 
 

Let Us Know About Your Rare Disease Day Events

Are you planning a Rare Disease Day event?  If so, please fill out the online form to let us know about it so that we can share the information with others.  If your event is open to the public, please be sure to note that in your submission.  Some of the events we’re aware of to date include the following: 

• The Manton Center for Orphan Disease Research in Boston will host a display in the main lobby of Children’s Hospital Boston from Feb. 22 to 28.  Meghan Connolly of the Manton Center has created a 60-foot paper link chain with names of more than 350 rare diseases that do not have clinical trials.  The chain will hang in a highly visible location in the lobby, with a poster explaining what it represents.  Other posters will be displayed at other locations in the hospital. 
• A member of the NORD Board of Directors will participate in a “Radio Media Tour” on Feb. 25, with several live interviews taking place all on the same day with radio stations across the U.S.
• The First Annual Sanford-Burnham Symposium on Rare Diseases: Collaborations That Drive Discovery, Therapy and Advocacy will take place on Feb. 26 at the Sanford/Burnham Medical Research Institute in California.  This event is funded in part by the MHE Foundation.  (Watch for more information on this.)
• The Cushing Support and Research Foundation will host its Second Annual Cushing Patient Awareness and Education Day on Feb. 27 at the Marriott San Mateo in San Francisco.  Several leading experts on the disease will participate.
• NORD will host an open house at its Danbury, Connecticut, offices from 3 to 6 p.m. on Friday, Feb. 26.  Anyone in the area on that day is welcome to stop in, meet our staff and tour the office.  We’ll display some of the patient stories and Research Hall of Fame nominations submitted for Rare Disease Day to increase awareness of why we do what we do.

Additional events will be posted over the next few days on the state-by-state map at www.rarediseaseday.us. 
 

Thank You To All Who Are Seeking Proclamations!

Representatives of the following organizations have been successful in obtaining state proclamations for Rare Disease Day.  We are grateful to all who are supporting Rare Disease Day by seeking proclamations: 

• Amyloidosis Foundation
• Amyloidosis Support Groups
• Arterial Tortuosity Syndrome patient community
• ECD (Erdheim-Chester Disease) Global Alliance
• MdDS Balance Disorder Foundation
• NORD Board Member
• PKS Kids
• Rubinstein-Taybi Syndrome Family Support Group for Ohio, Kentucky and Indiana
• Spastic Paraplegia Foundaiton

If’we’ve failed to mention any groups, please forgive us and write to rarediseaseday@rarediseases. org so that we can be sure to include the names in the next edition. 

We’re aware that valiant efforts have been made in some states (notably California) without success.  For those of you who have tried, please know that we appreciate your efforts. 

Watch For Our Flip-Cam Contest

In the next Partners update, we’ll tell you how you may win a Flip camcorder for your organization to create videos to raise awareness of the rare disease of interest to you. 

Final Call for Pins and Wristbands

We wanted to make the Rare Disease Day ceramic lapel pins and stretchy wristbands available to our Partners first, but NORD will post the remaining supply on its public website soon.  Please order now, if you intend to do so.  Write to csavino@rarediseases.org or call NORD (800 999-NORD) and ask for Christine Savino.