The following is an update on the
activities of the ECD Global
Alliance. We believe you might
find something of interest no matter
if you are a patient, family member
or medical professional.
A big "thank you" goes out to the
members who answered the ECD-GA
planning survey that was sent a few
months ago. The information
gathered from this survey was used
to begin planning several new
initiatives!
Thank you for your time, support,
encouragement and involvement.
Please be sure to visit the ECD-GA
website for news and updates at:
Dr. Juvianee Estrada-Veras, with the
National Institutes of Health, has
accepted the position of Federal
Liaison for the ECD Global Alliance
as of February 23, 2013. Many
patients may be familiar with Dr.
Estrada-Veras as the
lead investigator for the National
Institutes of Health's ECD natural
history study.
Research Grant Opportunities: The
ECD Global Alliance will be
awarding one or more research
grants in 2013. For more
information, please click on the
following link to access
the ECD grants page: http://www.erdheim-chester.org/Grants.html.
All interested
investigators are encouraged to
submit, regardless of location.
Research Grant Proposals are due by
May 15, 2013.
Communication and Sharing
Opportunities
Please Log-in and Post on Rare
Connect:
The Rare Connect project is a
social medical website that was
created by NORD & EURODIS for
rare disease communities. The
website has been designed to
provide patient outreach and
education. Please log in at: http://www.rareconnect.org.
Participants can request human
generated translations between
English, French, German,
Italian, and Spanish!
Online Chat:
Chat sessions are still
on-going and are a great way to
reach out to fellow ECD-GA
members to share experiences and
to fellowship. Chat sessions
are open to anyone who has an
interest in learning about ECD.
Chat sessions are held each
Saturday at 1:00 PM (ET) at the
following link:
http://www.chatzy.com/427437211406
Current Patient Studies
A comprehensive list of patient
studies, which includes the new
BRAF V600 Mutation Study, the
NIH Natural History Study and
the "Spit for a Cure" study can
be reviewed by clicking here:
http://www.erdheim-chester.org/ECDStudies.html
Events
The ECD-GA is hosting two events
in October/November, 2013, in
San Diego, California, at the
Marriott Marquis and Marina!
ECD-GA has already sent the
email invitations for this
event. If you did not recieve
an invitation, please contact
Christina Baker at
christina.baker@erdheim-chester.org.
·
Medical and Professional Community
Event:
Erdheim-Chester
Disease International Medical
Symposium scheduled for October 31,
2013:
o
This event will be a day long
syposium for physicians, scientists,
and other medical professionals to
come together and share new and
emerging information about
Erdheim-Chester Disease.
o
Information will be shared via oral
presentations, panel discussions and
a poster session.
Abstract submission for oral and
poster presentations are due by
May 30, 2013.
ECD Patient and Family Event:
Erdheim-Chester Disease Patient
and Family Gathering scheduled
for November 1- 2, 2013:
o
The Patient and Family Gathering
will be held from Friday, November
1, 2013 at 7:30 AM to
Saturday, November 2, 2013 at 4:30
PM.
o
Patients and families will have an
opportunity to hear first-hand from
leading ECD physicians and
researchers about the new and
emerging information presented at
the ECD International Medical
Symposium.
o
Patients and families will also have
an opportunity to learn about topics
of interest to ECD patients and also
enjoy fellowship with one
another. For more information about
this event, please email Christina
Baker at
christina.baker@erdheim-chester.orgwith
your questions or comments.
