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PANDAS Network.org

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Nonprofit Overview

Mission: PANDAS Network.org is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Armed with an impressive network of doctors, researchers and scientists, PANDAS Network.org strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS.

Results: Results of our 2013 efforts include: We are proud to be the most visited website devoted to PANDAS and PANS. As of 12/9/2013, we’ve had 150,604 visits and OVER 1/3 MILLION page views! These visits were achieved through relevant web searches. New patient brochures were developed as an introduction to PANDAS and PANS. They are ideal for physician offices and newly diagnosed families. Informational postcards have been developed for use at future conferences to broaden outreach. Support group listings grew to represent half of the United States! Thank you to our Support Group Coordinator for working hard to have a support group listed in every state. Snapshots of the community were encouraged by our support of the Univ. of Buffalo / USF Online Retrospective Survey. We provided materials to physician offices informing them of the research survey and promote participation. Learn more about this survey at pandasnetwork.org/survey. Professional Networking Opportunities were provided by the PANDAS Network “dinner of appreciation” held in conjunction with the Stanford Specialist Meeting. Conference representation included an inspiring presentation by our Executive Director along with an exhibit table at the NE PANS/PANDAS Conference and a printed awareness ad at the IOCDF Conference. New partnerships were formed with the NIMH National Partnership Program and the AARDA National Coalition of Autoimmune Patient Groups. These new partnerships are in addition to our existing affiliation with NORD. ----------------------------------------------------------------------------- Affiliations: - NIMH National Partner - NORD Patient Organization - AARDA – National Coalition of Autoimmune Patient Groups - Northeast PANS/PANDAS Conference Supporter - Brain Awareness Week Partner – The DANA Foundation - Rare Disease Day Partner - Children’s Mental Heath Awareness Day Participant - PANDAS/PITAND/PANS Awareness Day Organizer - Healthwise® – PANDASnetwork.org was chosen to be on their American Self-Help Group Clearinghouse’s database for PANDAS/PANS support groups (as seen on WebMed.com) ----------------------------------------------------------------------------- Representation at conferences: - NE PANS/PANDAS Conference (2013) - IOCDF Conference (2012) - University of California, Irvine Conference: UC Irvine Autoimmune Diseases of the Nervous System - Texas A & M Symposium: Who suffers from Post-Infectious Neurological Symptoms? Why Proper Diagnosis and Research are Critical - PANDAS Parents Symposium (2012) - PANDAS Parents Meeting (2011) - Northeast PANS/PANDAS Conference (2013)

Target demographics: Children and families affected by PANDAS and PANS

Geographic areas served: A national level

Programs: Founded in 2009, PANDAS Network.org is a non-profit organization that raises awareness of PANDAS and PANS onset and course of illness by providing: - An ongoing database of new PANDAS and PANS cases. - Parent referrals to support groups and physicians. - A conduit for new researchers to navigate collaborations and new treating physicians to find information. - Online newsletters to parents and physicians about latest research. - Information that is medically accurate and reviewed by our Scientific Advisory Board.

Community Stories

26 Stories from Volunteers, Donors & Supporters

2

Professional with expertise in this field

Rating: 5

PANDAS and PANS are devastating sudden-onset medical conditions that are terrifying for children and their parents. The disease is made even more terrifying due to the lack of expertise in the medical field and the shortage of trained professionals. Pandas Network has the best and most current research and medical information available in the world--all built and staffed by volunteers. Amazingly, they offer this service for free. This organization is simply the #1 place to go to- for researchers, medical professionals, educators, and parents alike.

3

Client Served

Rating: 5

PANDAS Network promotes awareness of PANDAS/ PANS diseases. The organization prints the most updated information about research and development and also helps to sponsor conferences. This is one of the most important nonProfits out today. This disease is not yet understood or treated by many doctors and this website is integral in getting the proper information out.

3 Emily42

Client Served

Rating: 5

PANDAS Network makes it simple for me to share quality information and resources with fellow education professionals and with other parents. I keep their website pinned to my bookmarks bar and share often on Facebook.

3

Client Served

Rating: 5

pandasnetwork.org is a great organization. They provide a wealth of information and also a directory to find a specialist in your area. "When you have an invisible illness, it's hard to explain to someone who doesn't have a clue. It's a daily struggle being in pain or feeling sick on the inside when you look fine on the outside." They connected me with other families who are going through the same thing!

3

General Member of the Public

Rating: 5

Pandasnetwork.org is amazing. The information is clear, accurate, and very helpful. They put me in touch with a doctor who put my daughter on the road to recovery. I don't know where my family would be without this site.

3

Volunteer

Rating: 5

PANDAS Network .org goes above and beyond what one would expect a non-profit organization to do. I have seen them grow from a group of parents just trying to help other families to a leader in the community that not only continues to directly help and communicate with families but is now a respected liaison with researchers and physicians. They have helped change the perception of PANDAS and PANS and is laying the groundwork for international awareness and acceptance of these disorders.