PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC

Rating: 4.42 stars   78 reviews

Issues: Health

Location: 3625 Orchard View Traverse City MI 49684 USA

Mission: 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.
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

2014 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars   Featured Review

13 people found this review helpful

This organization started as a one-woman show in Florida with an impossible mission. With a lot of hard work, the organization has grown from a local, statewide organization into a national presence. Although the organization represents and speaks on the behalf of other illnesses, P.A.N.D.O.R.A's focus on patient advocacy for chronic fatigue syndrome patients is unique. There is currently no other organization that advocates for the million or more patients with this illness at the national level. Advocacy for patients with this illness at the national level is of paramount importance as the federal government and the medical profession have ignored these patients and challenged the patients' belief that their belief is "real." Without P.A.N.D.OR.A. advocacy at the national level, there is little if any hope for these patients leaving them to suffer untreated or kill themselves.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

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Rating: 1 stars  

3 people found this review helpful

I can not give this organization a good review. PANDORA does not represent the ME and CFS community and are doing great harm by partnering with CAA/SMCI , HHS, NIH by participating in the IOM and NIH Partners To Prevention which is not based on science and will harm this patient community.

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Rating: 1 stars  

4 people found this review helpful

Pandora Org does real harm to Myalgic Encephalomyelitis patients by pretending to be a national organization and helping their friends in government agencies. Right now they are helping the National Institutes of Health, an agency of the Dept. of Health and Human Services, redefine ME so it will require treatment by psychs. In addition, Pandora Org told NIH that they should require even severely affected ME patients to exercise. This is ludicrous! Exercise is very harmful for ME patients and frequently causes them to be bedbound for weeks or months after exercise. It would be better for ME patients if Pandora just went back to doing whatever it does for its Michigan members instead of hurting ME patients all over the country.

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Rating: 1 stars  

3 people found this review helpful

Really, I am a CLIENT NOT SERVED. PANDORA ORG is not helpful to actual patients. They have proven again and again that they do not care about the people suffering with the illness. They should just disappear and stop torturing patients. I can't begin to describe how much trouble their incorrect information given to my doctor has caused me. They recommend exercise be required even of sufferers with very severe M.E. I have personally tried their recommendation for exercise--increasing amounts of exercise supposedly to build up ability to exercise--and it causes me to crash so I cannot get out of bed for weeks. These people are not helping patients. They are harming patients.

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Rating: 5 stars  

This growing organization has helped me connect with other people who have my illness (ME/CFS) and has helped me make my voice heard among government officials and medical professionals. PANDORA Org gives me some hope for my future, which is a precious gift.

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Rating: 1 stars  

4 people found this review helpful

Pandora Org proclaim to be advocates but they are not. Advocates fight for the people they serve. Pandora are only concerned with their own bottom line. Patients need to ask what have they done for you? Nothing except help implement an illness name that is totally meaningless. And they went against patients requests for them to object to a redefining of the illness ME which already had a definition. They have helped assure that ME will be forever cast as a non-illness and that biomedical research will never again exist. They are not advocates, they are running the business of non-profit which caters to the government interests. Meaning no research dollars will go for the biomedical cause again. Only CBT/ GET and antidepressant which make the illness worse.

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Rating: 1 stars  

5 people found this review helpful

If Pandora Org were honest and only said they are a support group for a small number of patients in Michigan, they might not be too bad, but NO, they try to say they are a national group and that they do work all over the country. This is not true. They only give quilts to people in Michigan and sometimes they give out donated gas cards to people who are active on their facebook page. That's it. That's what they do. They only do things for a very small number of their friends and they do nothing to help the millions of people lying in beds with chronic illnesses. They are a phony organization and they lie.

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Rating: 1 stars  

5 people found this review helpful

N.B. Comments listed here go back to October 2010--four years ago. We are now into the IOM-P2P farce that has been orchestrated -- within its set-up rules and parameters, to harm ME/CFS patients further.

The ME/CFS Experts and Researchers called for the STOP of the IOM contract--yet PANDORA, claiming to represent patients, did NOT back the ME/CFS Experts and Researchers.

PANDORA is not serving in the best interests of patients -- PANDORA along with CFIDS / CAA /SMCI are out for their own interests in lining up with NIH--CDC--IOM. The IOM and P2P = HARM to the patient community. This was fully recognized by the ME/CFS Experts and Researchers.

Now, it is four years later from these comments--many patients are seeing the truth about what PANDORA stands for and what it does not.

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Rating: 1 stars  

6 people found this review helpful

"Sadly, instead of showing solidarity with the experts and the patient community it is asserting to represent, PANDORA, following in the CFIDS Association of America’s (CAA) footsteps, chose not to stand with the ME experts regardless of what it is claiming. After much speculation last week by patients on the position of PANDORA on the IOM contract and silence for days, PANDORA went into full-blown damage-control mode on October 14, 2013. It finally released an official statement on the IOM contract (“position paper”). In it, PANDORA concedes that it “turn[ed] in a list of expert nominations.” Even though we pretty much knew, from the information that leaked last week, that this was going on, many patients’ hearts sank." For more info go to http://thoughtsaboutme.com/2013/10/16/opening-pandoras-box-pandora-cozies-up-to-iom/

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Rating: 1 stars  

4 people found this review helpful

PANDORA Org says it serves patients, but the only people it really serves are its officers and staff. They have sold out the interests of patients again and again. Right now they are serving their own interests against those of real patients in order to have a "seat at the table" when the US government redefines ME/CFS. Real ME patients know that PANDORA lies http://www.mecfsforums.com/index.php/topic,18375.msg156941.html#msg156941

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