Hello, all -
 
I am happy to share fresh news about the upcoming International Rare Disease Day
2009, Feb. 28th.  Please see news below (if you are on Yahoogroup EBZone, Ning
EBFriends or a non-English forum, please post this as I am not a member of those
forums). 
 
DEBRA Canada is a partner in CORD and NORD, who are both affiliates of
EURORDIS.  This year's International Rare Disease Day poster shows a child with
EB named Merel, from Belgium.  Sadly, Merel died at age 10 in 2007 from
EB-related complications. 
 
Complete information about the event is here: www.rarediseaseday.org, and
further information suggesting ways you may wish to observe this date is here: 
http://www.rarediseases.org/rare_disease_day/rare_disease_day_info.
 
Discovery Health press release: 
http://corporate.discovery.com/discovery-news/national-organization-for-rare-dis\
orders-to-partne/ 
 
Please share this date/event with everyone you know!  With 6,000+ rare diseases
in the world and millions affected, this year's poster presents an opportunity
to create EB awareness - and in our hearts, recognize little Merel.
 
Best regards,
Gena Brumitt Gruschovnik


Vice Treasurer, Executive Committee, DEBRA International -
www.debra-international.org
Director of Awareness & Education, DEBRA Canada - www.debracanada.org
Founder, Walk a Mile in My Shoes campaign for National EB Awareness Week -
www.ebrelay.org

We must be the change we wish to see in the world.  ~ Mahatma Gandhi

From: NORD <orphan@...>
Subject: Discovery Health Joins NORD in Promoting Rare Disease Day
To: "otm@..." <otm@...>
Received: Tuesday, February 10, 2009, 7:21 PM




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 Rare Disease Day Partner
Keeping you informed about rare diseases and orphan products

National Organization for Rare Disorders (NORD)

February  2009

Discovery Health Joins NORD in Promoting Rare Disease Day

Discovery Health To Be Media Partner
NORD is very pleased to announce that Discovery Health and its popular series,
Mystery Diagnosis, will be our media and program partners for Rare Disease Day. 
This means they will promote the day on the Discovery Health website
(www.discoveryhealth.com) and through their programming and media contacts.  A
national press release went out yesterday from the Discovery Health headquarters
in Silver Spring, Maryland.  Watch for future updates on this. 
NORD has worked with the producers of the Mystery Diagnosis TV show on several
episodes to raise awareness of rare diseases and the particular challenges faced
by affected individuals and families.  We appreciate Discovery Health’s offer of
assistance in promoting the themes of Rare Disease Day.  This will help us reach
a broader national audience. 
Global Rare Disease Day Online Sites
The global Rare Disease Day website is at www.rarediseaseday.org.  To see what’s
happening in other countries, go to this site and click on the various flags. 
Also, there are links on this site to the global Rare Disease Day social
networking pages on Facebook, YouTube, and Flickr.  Watch for an email within
the next few days regarding a U.S. Facebook presence that will link to the
global site.    
Turn Your State Green!
Thanks to ALL who have submitted letters to their governors asking that Feb. 28,
2009, be declared Rare Disease Day in their states.  The map below shows
proclamations received to date.  We especially want to thank the members of the
Spastic Paraplegia Foundation.  That organization’s members have sent letters to
governors of approximately 40 states!  Click here for a sample governor’s letter
and proclamation (resolution).

Rare Disease Research Hall of Fame
We’ve received several nominations, and we hope to receive more.  We will accept
them up to Feb. 27.  To nominate a researcher, please send a short (one page or
less) description of the researcher’s work, in language all can understand, to
rarediseaseday@rarediseases. org.  Include brief information about the disease
being studied, as well as information about what makes this researcher’s work,
approach, or level of commitment special.  If possible, please also email a
photo of the researcher. 
Media Clippings Beginning to Surface
Thanks to all who have submitted press releases to their media contacts. If you
haven’t done so yet, please click here to access the Rare Disease Day press
kit.  Feel free to personalize the materials to include information on your
organization or a specific disease.  
Events Being Planned by Partners
Several RDD Partners have notified NORD of special events being planned for Rare
Disease Day.  These include the following: 

The Cushing Support and Research Foundation will host the first National Cushing
Day on February 28 at the Intercontinental Hotel in Boston.  For information, go
to www.csrf.net. 
 

February is Primary Lateral Sclerosis and Spastic Paraplegia Awareness Month. 
For information, contact Sharen Bosen at Sharon@... or Linda Gentner at
lkgentner@...
 

The Hannah's Hope Fund has scheduled a press conference with Governor Patterson
of New York for February 26 at which the governor will sign a Rare Disease Day
proclamation. For information, go to www.hannahshopefund.org/data/.

 

A “Miracles at Milleridge” dinner dance to raise awareness of cystinosis and all
rare diseases is being hosted by the Cystinosis Research Network on February
28.  For information, go to www.cystinosis.org. 
 

Members of the MdDS Balance Disorder Foundation (representing people affected by
mal de debarquement syndrome) and the Quest Educational Foundation are planning
a "Spa Day at Shimmering Pines" event in Florida to coincide with the opening of
a new Scripps Research Center there. For information, write to
russodm@.... 
 

A “Leap of Hope” fundraiser for the Amyloidosis Foundation is being organized by
Lois and Richard Singer in Florida and will take place on Feb. 28.  For
information, write to rsinger2@....
 

BioMarin Pharmaceuticals has planned an event on Feb. 27 for its staff in
California at which NORD representatives Michael Langan and Nancy Harris (of the
NORD Board of Directors) will represent the RDD Partners.
 

The Office of Orphan Products Development at FDA is preparing a display of Rare
Disease Day posters and videos at FDA offices.  In addition, an FDA podcast is
being planned.
 

The NIH Genetic and Rare Disease Information Center (GARD) invited a NORD
representative to speak about Rare Disease Day to the GARD staff so that they
can share information about it with the public and with their media contacts.
 

Genzyme Corporation is planning a breakfast for its employees that will focus on
rare diseases and increasing awareness of what it’s like to have a rare disease.
 

The PMD (Pelizaeus Merzbacher disease) Foundation has planned awareness
activities that will "wrap up" with a party, including entertainment by a steel
drum band, on Sunday, March 1, at a local college culinary arts center (Hagerty
Center) in Traverse City, Michigan. Organizer Sharon Neumann extends an
invitation to any RDD Partners who happen to be in the area on that day! For
information, write to sneumann@....

 
If your organization or agency has planned an event that isn’t listed here,
please let us know about it so that we can share it with other RDD Partners.  
Last Call for Wristbands and Lapel Pins
After today, NORD will post the RDD wristbands and lapel pins on its website for
the public. If you’ve been planning to place an order, this would be the time to
do it.  Write to rarediseaseday@rarediseases. org and place orders in quantities
of 10.  
 

Current list of Rare Disease Day Partners

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© 2009 NORD, National Organization for Rare Disorders
55 Kenosia Ave., Danbury CT 06813       Tel: 1-800-999-NORD


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