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October 26, 2014
5 people found this review helpful

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October 26, 2014
5 people found this review helpful

I should say I am a client "not served." PANDORA Org says it is a national organization to benefit people with Myalgic Encephalomyelitis, but all it really does is serve a few members of small support groups in Michigan and Alabama, where its staff members live. On the national scene, it has failed to represent the interests of ME patients again and again, as it is doing now, with its recommendation for exercise to be required of ME patients, even those who suffer from severe ME.

With phony "friends" like these, who needs enemies?
October 25, 2014
1 person found this review helpful

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October 25, 2014
1 person found this review helpful

PANDORAORG 's concern for those of us with invisible illnesses such as ME/CFS is honest and from the heart. No other organization I know is as personally involved with the patient community. From quilts to wrap a patient in love, to advocacy projects, physician education, to feeding a debilitated NEIDS patient, PANDORAORG ensures a better today and tomorrow for all of us.

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When was your last experience with this nonprofit?

2014

October 25, 2014
1 person found this review helpful

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October 25, 2014
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!
October 24, 2014
2 people found this review helpful

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1 previous review
September 18, 2013

I can not put to words what a ray of hope PANDORA is to the patient population that they serve. They are our voice at local, state, and national events. They let us know of complicated issues involv... more

October 24, 2014
2 people found this review helpful

I help with the "Covered In Love" patient support area where we send out Handmade quilts to patients who are struggling with difficulties beyond their normal illness circumstances. In 6 months time, 3 volunteers have been able to send out 28 hand made quilts to patients not only in Michigan, but all area's of the United States, Canada, the UK, and Europe. This program brings so much joy and support to the patients who receive them. Most say they came at the darkest hours of their illness. It is a pleasure to be a part of this awesome organization. The integrity, compassion, and dedication of the board is beyond words.
September 18, 2013
5 people found this review helpful

I can not put to words what a ray of hope PANDORA is to the patient population that they serve. They are our voice at local, state, and national events. They let us know of complicated issues involving the FDA and CDC, etc. and put it in terms those us of with cognitive issues can understand. PANDORA educates health care providers so that they understand what we go through and keep them up-to-date on the latest research. They have pulled together the patient population that they serve, to have a voice, a loud voice, in an otherwise voiceless illness. We are the forgotten. We are the hard to treat and easy to ignore patients. PANDORA is a remarkable organization, with an incredible board of creative and inspiring people, many who know first hand what these illnesses can do to families. The patient population is very thankful to have PANDORA on our side, to advocate, educate, and enlighten us.

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

Life-changing

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?

2013

October 24, 2014
1 person found this review helpful

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October 24, 2014
1 person found this review helpful

I have never had the pleasure of working with a more dedicated group of individuals that put the patient's needs as an absolute top priority.
October 24, 2014
1 person found this review helpful

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October 24, 2014
1 person found this review helpful

They take on the challenge of making people aware of very devastating illnesses and advocating on their behalf.
October 24, 2014
2 people found this review helpful

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October 24, 2014
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.
October 24, 2014
2 people found this review helpful

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October 24, 2014
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
October 24, 2014
2 people found this review helpful

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October 24, 2014
2 people found this review helpful

There needs to be more groups like this one. Educating the medical field and patients. Giving help to those who would normally suffer in silence due to the range of care/education their medical team has. Fighting for so many that cannot make it out their bed or home. Compassionate about all that are suffering.
October 23, 2014
2 people found this review helpful

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1 previous review
February 3, 2011

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, an... more

October 23, 2014
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!

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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

February 3, 2011
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.!

The Great!

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.

Ways to make it better...

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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3 hours of volunteer time for this nonprofit will...

Help with filing in the office. Mailing letters to congressmen, participate in the physician grass roots campaign "Doctors need to know"; post our advocacy programs an efforts by sharing them with Facebook, Twitter and other community patient forums; make calls and or e-mail to patients who are homebound and lonely. Volunteer