PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC

Rating: 4.42 stars   78 reviews

Issues: Health

Location: 3625 Orchard View Traverse City MI 49684 USA

Mission: Our mission is to provide educational programs for patients, caregivers, physicians, researchers and the communities where awareness and services to the patient community are lacking. Our mission includes advocacy and grass roots initiatives to raise awareness for neuroendocrineimmune disorders in Florida and beyond. We support and advocate for increased scientific research to find a cure for these debilitating and disabling illnesses. Our goals are to encourage and assist patients and their families in leading productive and fulfilling lives.
Results: This past July we participated in the Chase Community Giving project. The public voted for us and we ranked number 162 on the list of the top 200 small charities in the U.S. winning a $20K grant to be applied for our daily operations and apply toward the advocacy efforts of the NEI Center. The NEI Centerâ„¢. This center will be the first research center of its kind. Individuals in need of assistance will benefit from cutting edge science, clinical support, and research, including our computer-aided disease diagnosis and treatment (CADDT) system, which will be specifically designed for multi-system illnesses and complex diseases. The end result will be world-wide access for patients, who will be able to find community social services and resources that will help them feel better, live longer and enhance their quality of life.
Target demographics: Individuals stricken with NeuroEndocrineImmune Disorders.
Direct beneficiaries per year: Patient and caregivers who participate in our educational community events and on our advocacy grass roots campaigns. We have seen our advocacy program steadily increase its effectiveness by the number of individuals joining our Facebook page and our Cause projects pages on Facebook.
Programs: Advocates Extraordinaire(tm), 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(tm), 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. Causes on Facebook: The NEI Center
2014 Top-Rated Nonprofit
Write a Review

See How $25 Can Help

See How 3Hrs Can Help

More Info

EIN 55-0795076
231-360-6830
Invite people to share their experience with this nonprofit!

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Rating: 5 stars  

3 people found this review helpful

As someone with multiple NEIDs, I am so thankful that PANDORA exists. Not only do they do a ton of good work; helping spread awareness, advocacy, education, supporting patients in various ways, promoting research, etc, etc, but by doing so, they also bring so much hope to a very under served patient population. When one is as sick as many of us are, and there are so few that even try to understand, let alone actually help, and so little good research for treatments and cures, etc, knowing that there is a group that truly cares is HUGE. Many in this patient population wind up committing suicide, because we are so sick, and have so little hope for good treatments, and so little validation. The impact of the hope for a better future that PANDORA gives us cannot be overstated, nor can the understanding and caring that they show over and over to so many patients.

Was this review helpful? 
Rating: 5 stars  

2 people found this review helpful

I'm so thankful for all their work! They are helping those of us who are too ill too fight for research for CFIDS/ME!

Was this review helpful? 
Rating: 4 stars  

2 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

Was this review helpful? 
Rating: 5 stars  

2 people found this review helpful

This non profit organization has helped so much with my battling a misunderstood illness.
I have learned so much and have made so many friends. Without people like this I felt so alone trying to understand what even Doctors don't understand. Thank you Thank You Thank You!

Was this review helpful? 
1 previous review
Rating: 5 stars  

6 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.

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

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

2 people found this review helpful

My non-profit has worked with Pandora since 2006 and have found them exceptional. They are volunteers who work tirelessly on behalf of patients suffering form ME/CFS, Fibromyalgia and neuroimmune illnesses. IIt has been our pleasure to have worked with them on many projects.

Was this review helpful? 
Rating: 5 stars  

2 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!

Was this review helpful? 
1 previous review
Rating: 5 stars  

4 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

Was this review helpful? 
Rating: 5 stars  

1 person 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!

Was this review helpful? 
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.

Was this review helpful? 
Rating: 5 stars  

4 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!!!

Was this review helpful?