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
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EIN 55-0795076
231-360-6830
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Community Reviews

Rating: 5 stars   Featured Review

14 people found this review helpful

This organization started as a one-woman show in Florida with an impossible mission. With a lot of hard work, the organization has grown from a local, statewide organization into a national presence. Although the organization represents and speaks on the behalf of other illnesses, P.A.N.D.O.R.A's focus on patient advocacy for chronic fatigue syndrome patients is unique. There is currently no other organization that advocates for the million or more patients with this illness at the national level. Advocacy for patients with this illness at the national level is of paramount importance as the federal government and the medical profession have ignored these patients and challenged the patients' belief that their belief is "real." Without P.A.N.D.OR.A. advocacy at the national level, there is little if any hope for these patients leaving them to suffer untreated or kill themselves.

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  

1 person found this review helpful

I have never had the pleasure of working with a more dedicated group of individuals that put the patient's needs as an absolute top priority.

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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!

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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!

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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  

5 people found this review helpful

PANDORA is dedicated to improving the lives of people with Myalgic Encephalomyelitis (M.E.). PANDORA is focused on helping patients integrate M.E. as part of their daily lives. This is mostly done through education. PANDORA is also heavily involved in awareness and advocacy. All of this is done to bring hope and help to the millions suffering from neuroimmune disease such as M.E.

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  

2 people found this review helpful

I commend P.A.N.D.O.R.A.s focus on quality of life for persons with
Neuroimmune disorders, efforts in embracing and unifying all persons and other organizations dealing with NEI disorders in such a positive manor. A model all such organizations can benefit from. The functions and accomplishments are immense considering the small budget and relatively small size of the Org.
The founder is truly an inspiring role model of dedication and altruistic acts in the face of her own struggle with NEIDs.

I've personally experienced the results of this organization in...

I became familiar with and inspired to become involved with P.A.N.D.O.R.A. many years ago after being ill and floundering for 2-3yrs.They provided me with much needed support, direction and education with Neuro-Immune disorders, and of most importance empowerment in the face of an unpredictable and unstable life altering illness.

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

P.A.N.D.O.R.A is well run.Does not have paid employees.Is very judious with using funds donated. While every Org. has room for improvment. More volunteers and funds to accomplish even more. An increase in volunteers not affected by the illness would be wonderful.

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