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62 Reviews
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October 14, 2014
1 person found this review helpful

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1 previous review
November 4, 2012

P.A.N.D.O.R.A. started with just one person who needed information about M.E. and not finding what she needed, she did research. This research led to more information being able to be shared by others... more

October 14, 2014
1 person found this review helpful

When I first became ill, I really had nowhere to go for information. Then I was directed to PANDORA ORG. The information is up-to-date and very informative about my own illness as well as many other neuroendocrineimmune disorders. This organization sends people to CDC meetings and FDA meetings as well as other venues where more support and help is needed to keep these organizations aware of patient's needs.
The patient is kept well informed of what progress is made as far as government research and physician education is concerned. Pandora Org is all volunteers so there is no worry of funds being misdirected or misused. Every thing is for the patient. Their website shows just hard they work and there is so much information there.
Patients can ask questions and are given up to the minute information and support. The voice of the patient is heard and conveyed to the government powers that be.
Pandora Org started out small, but has grown to a national level with members all over the U.S. Even people in other countries can come onto the website or Facebook page to offer support or ideas and collect the same.
Pandora Org offers HOPE!
November 4, 2012
3 people found this review helpful

P.A.N.D.O.R.A. started with just one person who needed information about M.E. and not finding what she needed, she did research. This research led to more information being able to be shared by others with this disorder. Then it grew and grew to what it is today. There are so many of us with these devastating neurological disorders and illnesses who are in terrible pain who now come to this group for help. P.A.N.D.O.R.A. now has the ability to help so many people with many different neuro disorders around the United States. This shows us that not only can we all help others but just look what one person can do!

More feedback...

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

October 13, 2014

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October 13, 2014

PANDORA Org is an all-volunteer organization that operates with very little funding, yet does very big work on a national level. It advocates for patients with NEIDs (ME/CFS, Fibromyalgia, Chronic Lyme Disease, Gulf War Illness, Multiple Chemical Sensitivity, and more) to the HHS, FDA, NIH, IOM, VA, and all the alphabet soup that is our federal government. And it advocates successfully. It is well-respected by those government agencies who recognize the number of patients that PANDORA Org supports. We also have been very active working as partners with other ME/CFS, FM, Lyme, and GWI groups to collaborate on difficult challenges, bringing all our power to bear on these tough problems.

Beyond this national advocacy mission, PANDORA Org also does the little things that mean a lot to patients - supplying meals to those who are most ill or following a surgery, sending a quilt to those who need a hug or the warmth our group can provide, a gift of flowers and a card to our special friends when they need a lift.

We can't help everyone because we never have enough money or volunteers, but we do what we can. We have brought on some new board members and officers and are refocusing on strategic planning and fundraising so we can better support our community of patients and advocate with more direction, train more doctors and nurses, and do all the things we've wanted to do. With luck and help, we'll be able to serve our patients even better in the future!
October 12, 2014
1 person found this review helpful

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October 12, 2014
1 person found this review helpful

This group has done well in Michigan and is working on bringing their services to other states and county's across the USA.
October 12, 2014
2 people found this review helpful

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October 12, 2014
2 people found this review helpful

PANDORA Org is a wonderful organization that helps our patient group in so many ways. For those who need information about their illness, they can find valuable information that they can also share with their doctor. PANDORA Org works to educate medical professionals about diseases that are often misunderstood. PANDORA Org's national efforts to help patients and advocate for them is invaluable. I am amazed at the many ways PANDORA Org serves our patient group!!! Thank you PANDORA for your work for our patient group!!!
October 4, 2014
1 person found this review helpful

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October 4, 2014
1 person found this review helpful

I should say I am a client UNSERVED! This organization is actually a local support organization for people in Michigan. Since I do not live in Michigan, all it does for me is continually ask me for money so they can do their services for their Michigan people.

They say they are a
national organization, but all they really do is serve people in Michigan.
September 19, 2013
2 people found this review helpful

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September 19, 2013
2 people 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!

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

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

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
4 people found this review helpful

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September 18, 2013
4 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
3 people found this review helpful

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September 18, 2013
3 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
3 people found this review helpful

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September 18, 2013
3 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

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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