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48 Reviews
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November 1, 2012
9 people found this review helpful

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November 1, 2012
9 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.

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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

September 19, 2013
1 person found this review helpful

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September 19, 2013
1 person found this review helpful

PANDORA exceeds expectations. They have supported my with ME/CFS with educational programs, providing me a place to stay when advocating. Top KNOTCH non profit serving the neuroendorcineinnu disorders! I can't thank thank them enough! Most advocates have this disease so it is incredible with the amount of work and efforts that take place year after year!

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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

September 18, 2013
1 person found this review helpful

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September 18, 2013
1 person found this review helpful

Always read very helpful information and they keep me informed of the latest news about CFS. A plus!

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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

September 18, 2013
2 people found this review helpful

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September 18, 2013
2 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.

More feedback...

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

September 18, 2013
2 people found this review helpful

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September 18, 2013
2 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.

Ways to make it better...

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

Continue to expand it

More feedback...

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

September 18, 2013
2 people found this review helpful

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September 18, 2013
2 people found this review helpful

When I was first diagnosed with CFS, many of my "friends" told me to just "suck it up" and push through, there's no such thing. Many of us heard the same type of things, but with the education and support, I've received from the support group, I've helped the people most important to me to understand. They really have saved my life!

More feedback...

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

July 25, 2013
2 people found this review helpful

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July 25, 2013
2 people found this review helpful

In 2007, I first met members of PANDORA and its founder Marly Silverman in person at a conference in Fort Lauderdale. As founder/president of the LIFELYME Foundation, Inc., I established our organization to serve as a educational resource for Lyme disease and other Neuro Immune Disorders. In 2008, two members of PANDORA were invited to speak at a conference our organization co-sponsored with the University of South Florida in St. Petersburg, FL. The conference was called, "Similarities and Paradoxes in Chronic Illnesses". Our intention was to bring together for the first time the top physicians and researchers with expertise on illnesses under the NEI umbrella to share their expertise on CFS/ME, Fibromyalgia, Lyme Disease, Gulf War Syndrome and Environmental Illnesses. Speakers Included: Brian Fallon MD, Nancy Klimas MD, Charles Ray Jones MD, JJemsek, MD, Leslie Fein MD, Dr. Kenneth Friedman Ph.D, and Kerry Clark Ph.D. Epidemiologist. In the following year, LIFELYME partnered with PANDORA to establish a NEI Center in New Jersey. A 'Resolution' to establish a NEI Center in NJ was passed unanimously. Hopefully in the future progress will be revitalized and make this dream a reality. Support is paramount to the success of the future visions of PANDORA. The members of PANDORA are giving their all in this effort to provide awareness, education, research and patient care for all patients suffering with these illnesses. Support PANDORA - The health of all Americans in the future depends on everyone's support.

Ways to make it better...

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

Not a thing. I have been an active member in the health community for 12 years, and the leadership and professionalism exhibited by PANDORA's advocates is inspiring. America is facing a Pandemic. The number of patients is growing faster than the facilities available to treat patients. As an advocate I have spoken with thousands of patients from all over the country, Canada and Europe. NEI Centers in every state bringing patients, physicians and researchers together is a viable solution.

More feedback...

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

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?

2013

July 24, 2013
2 people found this review helpful

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July 24, 2013
2 people found this review helpful

When I first became ill with this devastating disease, the first information I took seriously was a few websites that had "Memorial Lists" of people who suffered greatly before their disease overcame them. However, P.A.N.D.O.R.A was the first Patient Centered Organization that I could trust for accurate, and hopeful education regarding my disease day by day. There was much support for me at all stages of my deteriorating health. As time went on, I was better informed to focus on all the ways my Quality of Life can be improved. This is a very frustrating illness to get medical care for, but with the help of P.A.N.D.O.R.A's long suffering expertise, I have grown immensely in understanding how my life can be stronger on a daily basis.

I have learned to be an advocate for myself and others thanks to Lori and Marly. I enjoy any opportunity to interact with the staff and Leadership of P.A.N.D.O.R.A. I believe with the coaching, advocacy, education opportunities and my own personal, individual assistance, my life has been greatly improved in spite of the illness. P.A.N.D.O.R.A enlightens HOPE for millions who seek them for comfort.

Ways to make it better...

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

If there were changes to be made to P.A.N.D.O.R.A I would work to gain increased financial support for the Organization so that more people can live as independently as possible without any diminished Quality of their Life. P.A.N.D.O.R.A's efforts to expand, EDUCATE full scale, and Support people with complex neuro-immune diseases is highly commendable. I know with more resources P.A.N.D.O.R.A's Mission for less suffering will prevail.

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

July 22, 2013
2 people found this review helpful

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1 previous review
October 30, 2012

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... more

July 22, 2013
2 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!

More feedback...

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

October 30, 2012
5 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.

More feedback...

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

July 9, 2013
2 people found this review helpful

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July 9, 2013
2 people found this review helpful

I have been attending PANDORA meetings in Grand Rapids for several months now. The work Lori does to educate us, and also the supportive atmosphere, gives hope and practical ideas of how to live with, and improve one's quality of life when dealing with a neuro-endocrine immune disorder. There is so much that this organization is doing to bring awareness to others about these devastating diseases, as well as informing medical professionals and government officials about them, it is amazing! I am happy to be a part of spreading the word, and would not hesitate to recommend supporting their top notch research efforts and advocacy work. Awareness of the difficulties of living with Chronic Fatigue, Lyme Disease, Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivities is so needed! More knowledge will be empowering for those who struggle, and those who strive to treat these debilitating diseases.

More feedback...

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?

Quite well

When was your last experience with this nonprofit?

2013

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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