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 Centerâ„¢. 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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EIN 55-0795076
231-360-6830
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Community Reviews

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 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

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  

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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Role: General Member of the Public
Rating: 5 stars  

2 people found this review helpful

As a patient with ME/CFS, I am immensely grateful to PANDORA ORG for all their amazing advocacy work. Without organizations like them, we will never get the proper funding for biomedical ME/CFS research or the health care that the ME/CFS patient community so desperately needs.

ME/CFS is a severely debilitating neuroimmune disease which has been overlooked by the public authorities for decades. Change is needed, and PANDORA helps bring it around.

 
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Role: General Member of the Public
Rating: 5 stars  

2 people found this review helpful

Pandora does an amazing job of supporting a large and usually neglected community. The most important thing Pandora does for me is help me to keep hope. They educate the medical profession, which is a HUGE need, and patients and family, as well as offering a lot of practical and trusted help, when often there is virtually no support or understanding in a patient's home community

 
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Rating: 5 stars  

2 people found this review helpful

PANDORA ORG does an outstanding job for patients with NEID's and their families! They work to educate patients, their families, and physicians about NEID's. They engage in advocacy, support research, and are committed to improving the qualify of life for patients. PANDORA is an all-volunteer organization with compassionate and extremely committed leadership!

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2014

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

P.A.N.D.O.R.A. serves an estimated 20 million Americans affected by Neuroendocrine Immune illnesses. These illnesses include ME/CFS, Fibromyalgia, Multiple Chemical Sensitivites, Gulf War Syndrome, and persistent Lyme disease. The organization serves as an advocate for those suffering from these illnesses by helping shape public policy and supporting education and research. They are currently working toward the establishment of a clinical and research facility in New Jersey, the NEI Center. Their ability to bring people from different groups together has been impressive. Although they are a small organization, they were successful in getting other groups to vote for them in the recent Community Chase Giving Contest and won $20,000. The prize winnings will go largely toward the NEI Center. Their motto is: "ONE VOICE, ONE COMMUNITY, ONE CAUSE." Their dedication, enthusiasm, and "I Can!" mentality inspires everyone and gives hope that we will find ways to alleviate the suffering of those with NEI illnesses.!

I've personally experienced the results of this organization in...

P.A.N.D.O.R.A. supports awareness-raising projects. Recently they helped raise money to buy an ad in the Washington Post about ME/CFS. There was also a blurb from the ad that appeared on a huge sign in Times Square in New York City. These efforts help government officials and the public understand the devastating nature of NEID's and the need for increased funding.

If I had to make changes to this organization, I would...

If they had more funding, they could do even more.

 
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Review from Guidestar
Rating: 5 stars  

2 people found this review helpful

I'm so thankful for all their work! They are helping those of us who are too ill too fight for research for CFIDS/ME!

 
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Rating: 5 stars  

4 people found this review helpful

In my opinion P.A.N.D.O.R.A. has done so much for an under-served population (PNEIDS) with so little. Giving attention to medical,social,emotional and political needs of persons with neuro-endocrine-immune disorders.
Making efforts to unify to community of patients for the betterment of all.
I know for me personally at about the 3rd yr after being diagnosed and very discouraged (now @10yrs )
I found a P.A.N.D.O.R.A support group that had such a positive aura it helped me tremendously. I was motivated to become a volunteer and work on projects.It gave me a much needed outlet. Unfortunately my condition has deteriorated that I'm not able to participate as before, however I still support P.A.N.DO.R.A. in anyway I can and continue to get support from them by being able to stay current and knowing they are doing the best they can for for persons like M.E.

If I had to make changes to this organization, I would...

Continue to expand it

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

5 people found this review helpful

P.A.N.D.O.R.A.org is a wonderful advocacy and education group specializing in bringing awareness to the neuro-endocrine-immune diseases. Almost all of those involved in this organization, suffer from one of these diseases. These people are dedicated, knowledgeable, and highly motivated in their work. I have Myalgic Encephalomyelitis (ME), commonly sometimes known as Chronic Fatigue Syndrome. It is one of these diseases. This organization has been in the forefront of education and advocacy about my own illness for several years. The support it provides for those of us with these illnesses is deeply appreciated by all of us!

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

 
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1 previous review
Rating: 5 stars  

6 people found this review helpful

I have ME/CFS. A little known and much misunderstood disease. Many times I felt alone in trying to raise awareness about my disease and in finding resources to help me deal with the many problems of having such a disease. P.A.N.D.O.R.A. is an organization that promotes not only awareness of ME/CFS but also advocates on behalf of those of us who cannot.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

 
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