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Patient Alliance Neuroendocrineimmu Disorders Org For Resech & Adv Inc

Rating: 4.51 stars   93 reviews 5,170

Nonprofit Issues:

Health

Address:

3625 Orchard View Traverse City MI 49684 USA

Mission:

Our mission is to raise awareness and restore quality of life in persons with myalgic encephalomyelitis, fibromyalgia and related NeuroEndocrineImmune disorders. PANDORA empowers through patient assistance programs, is strong on advocacy, fosters education, and champion cures for neuro-endocrine-immune disorders through research. Vision: To make Myalgic encephalomyelitis, Fibromyalgia and related neuro-immune diseases understandable and curable.

Results:

To date, there are no FDA approved treatments for myalgic encephalomyelitis (ME). PandoraOrg, along with other organizations, were responsible for getting an FDA stakeholder meeting with patients and key governmental agencies at the table. PandoraOrg was asked to give a report about ME to the IOM during their scientific process of reviewing the state of ME/CFS. We were able to provide immediate assistance to hundreds of patients with our Compassionate Care Programs by delivering meals, giving Covered in Love quilts and helping with transportation to appointments.

Target demographics:

Individuals stricken with NeuroEndocrineImmune Disorders.

Direct beneficiaries per year:

patients by delivering several hundred meals. 46 quilts have been hand sewn and presented to those experiencing isolation and helplessness.

Geographic areas served:

improving patients lives

Programs:

PandoraDelivers™, arranges for nutritious fresh meals to be delivered nationwide to patients who are too sick to cook for themselves. The program helps with short term needs for patients who are going through an especially tough time such as returning from hospital visits. Covered in Love program provides home sewn quilts to patients experiencing a loss, undergoing distressing circumstances or facing a scary medical procedure. Advocates Extraordinaire™, 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™, 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.

2015 Top-Rated Nonprofit
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More Info

231-360-6830
www.pandoraorg.net

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Reviews for Patient Alliance Neuroendocrineimmu Disorders Org For Resech & Adv Inc

Rating: 5 stars   Featured Review

4 people found this review helpful

I have tears in my eyes when I try to describe what PANDORA has done for me. They offered support and guidance when all seemed lost. A family member was hospitalized and our rights were being violated. There was internal chaos within the hospital over our case. PANDORA was there with us, step by step, sorting out the steps, and with PANDORA' s help and our insurance company, we were able to have the strength to leave the hospital AMA and get the second opinion we needed, which was drastically different from the first. They also sent us a gas card to help with travel cost.

The passion and compassion that drives the volunteer members is amazing. They understand the needs of people who have NEIDS. They change words into action for what is needed most to help a person overcome rough spots.

 
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1 previous review
Rating: 5 stars  

6 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.

 
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1 previous review
Rating: 5 stars  

9 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.

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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Rating: 5 stars  

In October 2014, 10 people, in a concerted effort, posted 1-star reviews of PANDORA Org. to try and influence our rating negatively. They were angry because once we had learned HHS had already contracted with the IOM for the ME/CFS study, we decided to work with HHS and the IOM to ensure the IOM panel had the best membership possible and was asking the right questions with the best instructions possible. Others wanted us to join them in trying to have the contract cancelled, but we believed our fallback position was essential.

As it turned out, the IOM panel, with over half the panel members being experts in ME/CFS, conducted a very thorough and honest review of ME/CFS (which they recommended renaming SEID) and provided very strong and favorable results. After some initial shock and backlash about the report, everyone saw the government actually start taking action by funding SEID research, taking renewed efforts to reinvigorate SED strategic planning, treatment plans, developing diagnostic criteria, and more. Now patient groups are enthused and hopeful for the first time in a long time.

PANDORA doesn't expect to get any credit for choosing the right path, now that it's apparent we did, but we would hope we've developed some credibility with the community of ME/CFS (SEID) advocacy groups that we do share common interests and do have some workable ideas and expertise working with government agencies. We hope they will give us some credit in the future as we help lead the way in bettering the lives of our patients through advocating for better funding, research, treatments, and solutions.

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

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!

 
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Rating: 4 stars  

1 person found this review helpful

I was diagnosed in 2013 but was sick some time before. I was alone and in need of information and Pandora was there providing information (and hope) not available elsewhere. This non-profit is at the forefront of research....but also an organization that is there for the individual. I don't know what I would have done had I not found them. These illnesses are scary....but Pandora is there to hold your hand and help.

 
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Rating: 5 stars  

1 person found this review helpful

PANDORA is a long term established non profit helping the disabled chronically ill community. They add tremendous value to the lives of those affected with these horrible illness. Keep up the great work!!!

 
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Rating: 5 stars  

2 people found this review helpful

PANDORA is a terrific non profit resource for patients who are severely ill. Because our illness is not main stream in public or medicine even with the support of the IOM report and others. House and bedbound patients are reliant on a a great neuro-endocrine-immune NP for resources. These are resources we either can't physical acquire due to severe illness or don't have the resources PANDORA can provide. A great NP resource for caregivers and really sick patients. I have found Doctor referrals, wheelchair recommendations, any many other support I just wouldn't have the energy to find. Most of all PANDORA's board understand what I am going through even more than my own family members. A must have!!!

 
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Rating: 5 stars  

1 person found this review helpful

I am the president of Pandora Org and our board members take an active roll in making sure that individuals are not forgotten. We offer meals, gas money to doctors appointments and send gifts to people who are isolated.

I am a volunteer president, and all the board members are also volunteers. We don't profit financially from our service. In fact, I donate to Pandora Org so I pay to "work" here. What a privilege! We do, however, get paid with showers of praise by the patients and their families for making a difference in their lives.

We also advocate for better health policies. Myalgic Encephalomyelitis is not understood, so medical care for these patients is sub-standard. There are not any treatments or medications for this illnesses. Our roll to educate physicians and governmental officials is sometimes met with opposition. There were a loud few last year that took it upon themselves to criticize Pandora Org for taking a strong stance in helping the Institute of Medicine with their peer review study on ME. These few gave us poor ratings based on politics. Take their comments with a grain of salt. I'm sure you can see from the many 5 star ratings that we are an upstanding and honest organization who cares deeply about people.

Please consider donating, or volunteering, so we can continue our good works that directly support patients with compassionate care programs.


 
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Rating: 5 stars  

2 people found this review helpful

Pandora Org has been so very beneficial to me in many ways. I have received much information that I could pass on to my physicians to aid in my care of Fibromyalgia. Those of us who suffer with Fibromyalgia and ME cannot just exercise nor get up and be physically active like others can. With the aid of Pandora Org, I was given info for my doctor to help him understand why patients with Neuroendocrine Immune Disorders need to rest and do things at a slower pace. Pandora Org even has brochures describing NEIDS and proper patient care for physicians who just cannot understand their role in helping patient needs. Pandora Org representatives also attend government meetings concerning patients with NEIDS to give real patient testimony to what works and what does not. Pandora Org uses the information given freely by the patients and people whom it works with and not something contrived like some other places do. Pandora Org really cares about REAL people as evidenced by the many programs that it has such as 'Covered With Love', 'Mom's Meals' and others that assist patients who do not have the resources to help themselves. Pandora Org is there for it's patients and for their families and those that love them.

 
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Rating: 5 stars  

4 people 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!

 
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1 previous review
Rating: 5 stars  

6 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!

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

 
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Rating: 5 stars  

4 people found this review helpful

Pandora Org has been so very beneficial to me in many ways. I have received much information that I could pass on to my physicians to aid in my care of Fibromyalgia. Those of us who suffer with Fibromyalgia and ME cannot just exercise nor get up and be physically active like others can. With the aid of Pandora Org, I was given info for my doctor to help him understand why patients with Neuroendocrine Immune Disorders need to rest and do things at a slower pace. Pandora Org even has brochures describing NEIDS and proper patient care for physicians who just cannot understand their role in helping patient needs. Pandora Org representatives also attend government meetings concerning patients with NEIDS to give real patient testimony to what works and what does not. Pandora Org uses the information given freely by the patients and people whom it works with and not something contrived like some other places do. Pandora Org really cares about REAL people as evidenced by the many programs that it has such as 'Covered With Love', 'Mom's Meals' and others that assist patients who do not have the resources to help themselves. Pandora Org is there for it's patients and for their families and those that love them.

 
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Rating: 5 stars  

1 person found this review helpful

this is simply an amazing organization. i have severe ME. & PANDORA has been there for me every step of this difficult path. from being covered in love .. with the beautiful quilt. to helping me with meals. & offering in other realms to advocate on my behalf, as i am alone. i am so so grateful to all of the wonderful people involved in this wonderful organization. we are truly lucky to have them working & advocating on our behalf.

 
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Rating: 5 stars  

3 people found this review helpful

As a person who served on Pandora Org.'s board of directors in the past I can attest to what drives this organization. It is deep concern for patients who all across the country are regularly faced with seemingly impossible problems in their daily lives due to having little understood and often invisible diseases or conditions

Pandora Org. works behind the scenes to try to get much needed education programs up and running. They also work with medical centers that develop an interest in opening specialty clinics with the hope that more medical doctors and nurses will continue learning about and providing informed, proper medical care for the millions who suffer from nuero/endocrine/immune diseases.

The negative comments left for this organization came about due to a disagreement about an advocacy issue. Reading through those reviews it could appear as if Pandora Org. did something self serving and wrong. Nothing could be further from the truth. There are more patients who applauded Pandora Org. for their stand on an issue involving the IOM than the negative reviewers claim. The fact that some did not agree with the decision in no way means Pandora is self serving, works against patients or that their board members benefit in some personal way etc.. It actually shows that the organization is able to stand up and do what they feel is best for patients after reviewing all the facts of an issue. There is never total support for any one idea in the work of advocacy.

The heart and soul of this organization is a woman named Lori Kroger. I have personally worked with her and I can attest to her honesty, dedication to the patient community and to the fact that neither she, nor any board member personally profits from serving on the board. All board members are volunteers. Most who serve on the board of directors are sick themselves They pour out what little energy they may have regularly on behalf of the patient population. That is honorable and should be praised.

It is easy to cast stones, make accusations and sully someone's good reputation. Neither Pandora Org. or it's board members deserve anything but praise for the excellent work they do, the comfort they give and the sleepless nights many of them spend listening to and being concerned over different situations that patients are struggling with.

I am no longer a board member but I think my best endorsement is that I donate to this organization financially and trust them implicitly. I have had the pleasure of an inside view to how this organization operates and how it's members behave. I have also seen first hand the help behind the scenes that Pandora Org. offers. I would recommend you study this organization and support it either financially or by becoming a volunteer.

 
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