Patient Alliance Neuroendocrineimmu Disorders Org For Resech & Adv Inc
Rating: 4.5 stars 90 90 reviews
3625 Orchard View Traverse City MI 49684 USA
Our mission is to provide educational programs for patients, caregivers, physicians, researchers and the communities where awareness and services to the patient community are lacking. Our mission includes advocacy and grass roots initiatives to raise awareness for neuroendocrineimmune disorders in Florida and beyond. We support and advocate for increased scientific research to find a cure for these debilitating and disabling illnesses. Our goals are to encourage and assist patients and their families in leading productive and fulfilling lives.
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.
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.
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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Reviews for Patient Alliance Neuroendocrineimmu Disorders Org For Resech & Adv Inc
1 person found this review helpful
PANDORA is a terrific non profit resource for patients who are severely ill. Because our illness is not main stream in public or medicine even with the support of the IOM report and others. House and bedbound patients are reliant on a a great neuro-endocrine-immune NP for resources. These are resources we either can't physical acquire due to severe illness or don't have the resources PANDORA can provide. A great NP resource for caregivers and really sick patients. I have found Doctor referrals, wheelchair recommendations, any many other support I just wouldn't have the energy to find. Most of all PANDORA's board understand what I am going through even more than my own family members. A must have!!!
I am the president of Pandora Org and our board members take an active roll in making sure that individuals are not forgotten. We offer meals, gas money to doctors appointments and send gifts to people who are isolated.
I am a volunteer president, and all the board members are also volunteers. We don't profit financially from our service. In fact, I donate to Pandora Org so I pay to "work" here. What a privilege! We do, however, get paid with showers of praise by the patients and their families for making a difference in their lives.
We also advocate for better health policies. Myalgic Encephalomyelitis is not understood, so medical care for these patients is sub-standard. There are not any treatments or medications for this illnesses. Our roll to educate physicians and governmental officials is sometimes met with opposition. There were a loud few last year that took it upon themselves to criticize Pandora Org for taking a strong stance in helping the Institute of Medicine with their peer review study on ME. These few gave us poor ratings based on politics. Take their comments with a grain of salt. I'm sure you can see from the many 5 star ratings that we are an upstanding and honest organization who cares deeply about people.
Please consider donating, or volunteering, so we can continue our good works that directly support patients with compassionate care programs.
1 person found this review helpful
As a person who served on Pandora Org.'s board of directors in the past I can attest to what drives this organization. It is deep concern for patients who all across the country are regularly faced with seemingly impossible problems in their daily lives due to having little understood and often invisible diseases or conditions
Pandora Org. works behind the scenes to try to get much needed education programs up and running. They also work with medical centers that develop an interest in opening specialty clinics with the hope that more medical doctors and nurses will continue learning about and providing informed, proper medical care for the millions who suffer from nuero/endocrine/immune diseases.
The negative comments left for this organization came about due to a disagreement about an advocacy issue. Reading through those reviews it could appear as if Pandora Org. did something self serving and wrong. Nothing could be further from the truth. There are more patients who applauded Pandora Org. for their stand on an issue involving the IOM than the negative reviewers claim. The fact that some did not agree with the decision in no way means Pandora is self serving, works against patients or that their board members benefit in some personal way etc.. It actually shows that the organization is able to stand up and do what they feel is best for patients after reviewing all the facts of an issue. There is never total support for any one idea in the work of advocacy.
The heart and soul of this organization is a woman named Lori Kroger. I have personally worked with her and I can attest to her honesty, dedication to the patient community and to the fact that neither she, nor any board member personally profits from serving on the board. All board members are volunteers. Most who serve on the board of directors are sick themselves They pour out what little energy they may have regularly on behalf of the patient population. That is honorable and should be praised.
It is easy to cast stones, make accusations and sully someone's good reputation. Neither Pandora Org. or it's board members deserve anything but praise for the excellent work they do, the comfort they give and the sleepless nights many of them spend listening to and being concerned over different situations that patients are struggling with.
I am no longer a board member but I think my best endorsement is that I donate to this organization financially and trust them implicitly. I have had the pleasure of an inside view to how this organization operates and how it's members behave. I have also seen first hand the help behind the scenes that Pandora Org. offers. I would recommend you study this organization and support it either financially or by becoming a volunteer.
3 people 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