PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
Rating: 4.42 stars 78 reviews
Location: 3625 Orchard View Traverse City MI 49684 USA
Results: This past July we participated in the Chase Community Giving project. The public voted for us and we ranked number 162 on the list of the top 200 small charities in the U.S. winning a $20K grant to be applied for our daily operations and apply toward the advocacy efforts of the NEI Center. The NEI Center™. This center will be the first research center of its kind. Individuals in need of assistance will benefit from cutting edge science, clinical support, and research, including our computer-aided disease diagnosis and treatment (CADDT) system, which will be specifically designed for multi-system illnesses and complex diseases. The end result will be world-wide access for patients, who will be able to find community social services and resources that will help them feel better, live longer and enhance their quality of life.
Target demographics: Individuals stricken with NeuroEndocrineImmune Disorders.
Direct beneficiaries per year: Patient and caregivers who participate in our educational community events and on our advocacy grass roots campaigns. We have seen our advocacy program steadily increase its effectiveness by the number of individuals joining our Facebook page and our Cause projects pages on Facebook.
Programs: Advocates Extraordinaire(tm), a leadership advocacy program aimed to teach patients to express effectively their personal voices and work in collaboration with our board to implement fund raising, grass roots campaigns, media awareness. One Voice, One Community, One Cause(tm), an advocacy program dedicated to bring unity to our overall community, We aim to reduce the gap between the many organizations and patient groups working as a bridge to facilitate understanding, foster collaboration and increase trust among the groups and other stakeholders. The goal of the program is to engage our health government agencies in a much needed conversation and assure a seat at the table on issues affecting public health. Causes on Facebook: The NEI Center
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1 person found this review helpful
I have many neuroendocrineimmune disorders, i.e. ME/CFS, FM, Interstitial Cystitis, Sjogrens, and others. I so admire the wonderful folks at PANDORA for their hard work, caring and support for patients with NEIDs. I have observed and participated as I have been able in their many advocacy efforts. They strive to spread awareness, advocate, educate, support patients in various ways, and promote research. One of their most important endeavors is physician education. Thank for all that you are doing for our "invisible" illnesses!
1 person found this review helpful
NEI disease is mostly ignored and misunderstood. Most doctors know little or nothing about NEI disease, and there is no reliable treatment. I can no longer work because of NEI disease. Before NEI disease forced me to stop working, I was a Senior Administrative Analyst. Part of my work was to pick companies to work for us as on specific projects. P.A.N.D.O.R.A. impresses me so much I don't hesitate to recommend them. For example, they spearheaded an effort which led to the State of New Jersey approving the building and funding of a a NEI research and treatment center. This is exactly the kind of result we need if we want find a cure.
I've personally experienced the results of this organization in...
The treatment and research center is not open yet. So there is nothing for me to directly experience, except the feeling of hope it brings.
If I had to make changes to this organization, I would...
"If it ain't broke, why fix it."
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They advance the cause of people with NEI disease