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   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  

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

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

Pandora is a wonderful organization which does great work for the patient community. I especially am grateful for their efforts to educate medical professionals - very important work for all of us effected by neuroendocrineimmune disorders! I have been a recipient of their direct-to-patient services and can't even begin to say how much that means to me.

 
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Rating: 5 stars  

2 people found this review helpful

Wonderful caring group helping those with what are to most..." Invisible illnesses."

I personally have benefited by being informed and cared about then through the covered in love program.... At exactly the moment I need that reminder!


The way they share research info and such had been just a real blessing in my life.

 
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Rating: 5 stars  

2 people found this review helpful

I am an ME patient and applaud Pandoras participation in the IOM contract which resulted in a positive outcome with the hallmark of the condition , post exertion neuroimmune exhaustion being highlighted as a principle diagnosic critera . Pandora actively spoke for the patient community , presenting patient experience and research for the panel to include in their scientific research review . I am very appreciative to the organisation for devoting their time to representing the patient community as I personally do not have the energy to consistently participate in advocacy myself .

 
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Rating: 1 stars  

4 people found this review helpful

Pandora Org does real harm to Myalgic Encephalomyelitis patients by pretending to be a national organization and helping their friends in government agencies. Right now they are helping the National Institutes of Health, an agency of the Dept. of Health and Human Services, redefine ME so it will require treatment by psychs. In addition, Pandora Org told NIH that they should require even severely affected ME patients to exercise. This is ludicrous! Exercise is very harmful for ME patients and frequently causes them to be bedbound for weeks or months after exercise. It would be better for ME patients if Pandora just went back to doing whatever it does for its Michigan members instead of hurting ME patients all over the country.

 
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Role: Client Served
Rating: 1 stars  

3 people found this review helpful

Really, I am a CLIENT NOT SERVED. PANDORA ORG is not helpful to actual patients. They have proven again and again that they do not care about the people suffering with the illness. They should just disappear and stop torturing patients. I can't begin to describe how much trouble their incorrect information given to my doctor has caused me. They recommend exercise be required even of sufferers with very severe M.E. I have personally tried their recommendation for exercise--increasing amounts of exercise supposedly to build up ability to exercise--and it causes me to crash so I cannot get out of bed for weeks. These people are not helping patients. They are harming patients.

 
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Rating: 5 stars  

3 people found this review helpful

This growing organization has helped me connect with other people who have my illness (ME/CFS) and has helped me make my voice heard among government officials and medical professionals. PANDORA Org gives me some hope for my future, which is a precious gift.

 
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Rating: 1 stars  

5 people found this review helpful

If Pandora Org were honest and only said they are a support group for a small number of patients in Michigan, they might not be too bad, but NO, they try to say they are a national group and that they do work all over the country. This is not true. They only give quilts to people in Michigan and sometimes they give out donated gas cards to people who are active on their facebook page. That's it. That's what they do. They only do things for a very small number of their friends and they do nothing to help the millions of people lying in beds with chronic illnesses. They are a phony organization and they lie.

 
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