Hello, all -
 
If you are a member of EBZone or EBFriends, please pass this on as I am not a
member of those groups...
I haven't been on the yahoogroups or able to read digests in some time due to
other commitments, so I don't know if this has been a topic of discussion... if
not, I wanted to share this very sad story about a baby with EB.  I thought
there may be a Texas EB family who could contact CPS to offer helpful EB
knowledge/assistance. Please see the article in the Dallas News:
http://www.dallasnews.com/sharedcontent/dws/news/localnews/stories/DN-sickbaby_1\
7met.ART.State.Edition1.4c41641.html
 
These links may be helpful for CPS contact information:
http://www.dcac.org/pages/contact_us.aspx 
https://www.dfps.state.tx.us/Contact_Us/Default.asp
 
Not to bug everyone, but here's a last reminder that Feb. 28th is International
Rare Disease Day 2009.  This is such a great opportunity!  The child on the
poster has EB - which is amazing considering it's one of over 6,000 rare
(orphan) diseases in the world.  My friend and colleague, Paola Zotti of DEBRA
Italy, is on the EURORDIS board of directors and she must be credited for
getting the photo of this Belgian child with EB on the poster.  Paola has a
daughter with RDEB HS.
 
If you have a website, you can add a banner link to your page, more information
and the code you need are found here:  http://www.rarediseaseday.org/download

 
National Organization of Rare Disorders (NORD) has information about what's
happening in the U.S. here:  http://www.rarediseases.org/.  You can ask your
governor, city mayor, etc., to issue a proclamation such as those seen here:
http://www.rarediseases.org/rare_disease_day/rare_disease_day_map
 
DEBRA Canada is a partner in NORD and CORD for International Rare Disease Day
2009.
 
Love to all,
Gena
Vice-Treasurer, DEBRA International - www.debra-international.org
Director of Awareness & Education, DEBRA Canada - www.debracanada.org
Founder/CEO, Walk a Mile in My Shoes campaign for National EB Awareness Week -
www.ebrelay.org  
 

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