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"Connect the Docs"
Maps of NMO sites and doctors who treat NMO.
The Science of NMO
NMO scientific content
NMO Life
NMO discussion group about enhancing life living with NMO
All site groups
open group / 8 members
open group / 3 members
What book(s) do you recommend?
The Guthy-Jackson Charitable Foundation recommends these uplifting and healthy living books to help those living with NMO.
open group / 2 members
Information and discussion on World Rare Disease Day bythe Children's Rare Disease Network.
closed group / 13 members
closed group / 7 members
All Greater Good Foundation Techical Working Group
A membership only group for the All Greater Good Foundation.
open group / 5 members
FIND AN NMO CLINICIAN NEAR YOU.
The Guthy-Jackson Charitable Foundation is creating maps displaying the locations of doctors who treat NMO and we need your help!
If your doctor(s) treats NMO patients, please email us at: info@guthyjacksonfoundation.org. Please include the name of your doctor(s), clinical site name, and the clinical site location. In your email, please include a confirmation of permission from your doctor(s) allowing stated information to be posted on Spectrum and The Guthy-Jackson Charitable Foundation's website.
FIND CLINICIANS IN:
ASIA EUROPE SOUTH AMERICA NORTH AMERICA
or Click on the Group Pages below to view maps.
open group / 11 members
The Guthy-Jackson Repository for NMO
Participate in the GJCF Repository for NMO by donating a sample.
Overview
In an effort to foster scientific collaboration for Neuromyelitis Optica (NMO) Spectrum Disease, The Guthy-Jackson Charitable Foundation has established a sample and data repository for NMO with The Accelerated Cure Project (ACP) and the University of Texas Southwestern (UTSW). In this initiative, people with NMO can enroll into the repository at ACP’s collection sites located in leading neurology clinics across the US. Participants provide blood samples and information, which will in turn be used by qualified scientists whose research will contribute to the diagnosis, prevention, treatment, and/or cure of NMO.
How Subjects Are Enrolled
NMO subjects are primarily enrolled through the efforts of a study nurse employed by UTSW. Working together with ACP, NMO subjects will be identified and invited to participate in the repository, either by visiting one of the ACP repository sites or accepting an enrollment visit from a UTSW Registered Nurse (R.N.).
We Will Come to You
If you would like to participate in the NMO Repository by donating a sample, but you are unable to visit one of the NMO Repository sites, the NMO Study Nurse, employed by the University of Texas Southwestern Medical Center in Dallas, TX, will travel to your location to draw your sample.
Please contact Sara Loud at the ACP to schedule your blood draw.
How Scientists Request Samples
The request process is straightforward. Researchers are asked to submit a written proposal using the ACP Sample Request Form. The proposal is reviewed at Accelerated Cure Project and ultimately submitted to an oversight committee for review. Researchers are encouraged to make application immediately upon discernment of need. A response will be forthcoming upon review and recommendation.
Collection Sites
• Johns Hopkins School of Medicine, Baltimore
• University of Texas Southwestern Medical Center, Dallas
• Multiple Sclerosis Research Center of New York
• Shepherd Center, Inc., Atlanta
• University of Massachusetts Medical School
• Barrow Neurological Institute, Phoenix
• Beth Israel Deaconess Medical Center, Boston
• Ohio State University Medical Center, Columbus
• Rocky Mountain MS Center at Anschutz Medical Campus, University of Colorado Denver
Pediatric Collection Sites
• Johns Hopkins School of Medicine, Baltimore
• University of Texas Southwestern Medical Center, Dallas
• Multiple Sclerosis Research Center of New York
• University of Massachusetts Medical School
• Barrow Neurological Institute, Phoenix
More Information
To learn more about the repository, its operations, and available samples and data visit the Accelerated Cure Project’s web site at: http://www.acceleratedcure.org/repository/index.php
Contact for Additional Information
Sara Loud
Repository Director
Phone: +1-781-487-0032
Fax: +1-781-487-0009
Email: sloud@acceleratedcure.org
Hollie Schmidt
VP of Scientific Operations
Phone: +1-781-487-0099
Fax: +1-781-487-0009
Email: hollie@acceleratedcure.org
www.acceleratedcure.org
open group / 15 members
NMO Patient Days - Living with NMO
NMO Patient Days
2009
2010
2011
Neuromyelitis optica (NMO) is an uncommon disease syndrome of the central nervous system (CNS) that affects the optic nerves and spinal cord. This rare neuroimmunologic disease affects approximately one in 100,000 people. Most patients have never met another person who has NMO. They live with their disease isolated from others like them, unable to relate their experience and frustration. In fact, NMO is so rare, many clinicians aren’t aware of it and thus are challenged to provide treatment or even answers for these patients.
The Guthy-Jackson Charitable Foundation’s NMO Patient Days offer patients, caregivers, family and friends a rare opportunity to spend a day with each other and leading NMO scientists and clinicians. Attendees get the latest information about NMO science and clinical treatments, while they share stories, reunite with old friends and make new ones and contribute to enhancing the NMO community.
open group / 4 members
This group maintains the Spectrum help pages. It also provides a forum for collecting user tips about the effective use of Spectrum.
Spectrum is based on an open-source social networking platform, Elgg. In 2008, Elgg recieved the Infoworld's BOSSIE award for being the best open source social networking platform.
open group / 438 members
Welcome to the Spectrum Community group. In this group, you are invited to share your ideas and experiences interacting with Spectrum.
Create a new Group Page by clicking on "Group Pages" link in the left side navigation box to begin your idea/experience sharing.
A Rare Approach to a Rare Disease
