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48 Reviews
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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.

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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

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!

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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

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.

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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

June 6, 2013

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June 6, 2013

I have supported and worked with this great organization for three years now. They not only give accurate information to our physicians so we can be treated appropriately and correctly, but they give hands on support to patients with chronic illnesses such as ME/CFS, Fibromyalgia, Chronic Lyme and Gulf War veterans.

There is no org that I know of that caters to and supports neuroimmune disorders. PANDORA does it all, both personally and peripherally, with direct patient contact and support and in educating those who care for us medically.

Most of all, PANDORA give HOPE to millions who have been suffering in silence, invisible and ignored.

I support them fully.

Ways to make it better...

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

Find donors who are willing to make long-term commitment to their continued operation. They are working on a shoestring, so I would like to find a large donation to further their exemplary work.

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When was your last experience with this nonprofit?

2013

November 12, 2012
4 people found this review helpful

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November 12, 2012
4 people found this review helpful

PANDORA works with neuroendocrine immune disorders, including ME/CFS, Fibromyalgia, Multiple Chemical Sensitivities, Chronic Lyme Disease, and Gulf War Illnesses. They provide education for patients and for physicians. They advocate for government services for patients and increased government funding for medical research. An innovative program is the training of patients to be effective advocates for themselves. Local fund-raisers are held to fund patient services and medical research. This is an organization which has inspired hope in me and in countless other patients in this country and beyond!

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When was your last experience with this nonprofit?

2012

November 5, 2012
5 people found this review helpful

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November 5, 2012
5 people found this review helpful

PANDORA does and AMAZING job at advocacy and raising awareness and helping the Millions with ME/CFS , Fibromyalgia, MCS and other related invisile illesses.So many suffer in silence with these diseases which are so poorly understood by both the Medical profession and the public-including patients own families and friends. Providing information, compassion and understanding and support is so key to being able to survive, just day to day, and to have hope for a better future. They give outstanding individual, personal and group support and are always there, on Facebook, Website, and at all important Government and other meetings, as well as organizing many of their own events.

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

When was your last experience with this nonprofit?

2012

October 30, 2012
5 people found this review helpful

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October 30, 2012
5 people found this review helpful

I was diagnosed with ME/CFS in 2010 at Mayo Clinic. Back in my hometown I couldn't find a doctor who was educated about this horrible illness. I reached out to PANDORA & CF Solutions of West Michigan. I received hope, support &, education. They even had information that I could share & educate my doctors with. They are always kind and get back to you in a timely manner if you have a question, which is amazing since most of them are as sick as I am. I am very greatful for an organization like this.

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?

2012

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!

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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?

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

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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