Patient Alliance Neuroendocrineimmu Disorders Org For Resech & Adv Inc

Rating: 4.51 stars   93 reviews

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  

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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1 previous review
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  

4 people found this review helpful

PANDORA Org is a wonderful organization and I have personally benefited from their services. I was wrapped with love from a hand made quilt during a time of intense sickness and pain. I was also sent Ensure drinks during a time that I was unable to eat. I am so thankful for their physician and medical professional training that is so desperately needed since neuro endocrine immune disorders are not always studied in medical school. This is an invaluable resource for people in the ME/CFS patient group. I am so thankful for Pandora Org!!

 
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1 previous review
Rating: 5 stars  

7 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!!!

 
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Rating: 5 stars  

3 people 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.

When was your last experience with this nonprofit?

2014

 
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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: 4 stars  

4 people found this review helpful

Pandoraorg is here to help. They have done a wonderful job gathering information pertaining to those that suffer from many medical conditions and spreading the word. They also work to improve the lives of those suffering.

When was your last experience with this nonprofit?

2014

 
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Rating: 5 stars  

2 people found this review helpful

How about a new name? I suggest Neuro-Endochrine Exhaustion Disorder - (NEED)!

 
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Rating: 3 stars  

2 people 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.

 
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Rating: 5 stars  

5 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.

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.

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

 
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Rating: 5 stars  

5 people found this review helpful

ME/CFS has a horribly negative impact on millions of lives. PANDORA is a positive voice for those of us who are ill. The people are so warm, friendly, helpful, and giving. I just can't say enough good things about this organization, and will volunteer to help whenever I am able.

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?

2012

 
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