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

Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

They take on the challenge of making people aware of very devastating illnesses and advocating on their behalf.

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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.

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Rating: 5 stars  

2 people found this review helpful

PANDORA rocks hard! They do a lot with a limited budget. Noone takes any salary. PANDORA lobbies in DC and state capitols- successfully. One nei disease center has been set up in NJ. They are working on one in FL. They fundraise in the general population- walk a thons etc- make grants for research. Their brand of advocacy is effective and ME patients are in dire need of it. PLEASE SUPPORT PANDORA ANY WAY YOU CAN! Thank you!

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

Increase research and clinical activity on ME around the USA.

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

Make it bigger! Please help with your financial and other support!

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Review from Guidestar
Role: Professional with expertise in this field
Rating: 4 stars  

2 people found this review helpful

I have severe ME-CFS & have had the condition for 50 odd years now, it waxes and wanes. For what ever reason the government agencies have, on the whole, been dismissive of this illness since 1970. PANDORA seems willing to stand up to these agencies in a way that our other national group has not. In some instances they can be a little heavy handed but considering how lax the other national org has been, that might be a good thing. They will have to recognize that people must be allowed to choose what their own paths will be; but this problem could be due to the youth of the organization.

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

A little early to expect results, but they have made great efforts & seem poised to do more. They are deeply committed to the cause & did assist in getting a boy reunited with his family after he had wrongly been removed by DSS.

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

Have them see that reasonable people can disagree, and allow people to choose whether or not they want to participate in a given project. No one is right 100% of the time.

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Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

PANDORA and founder Marly lead a sincere effort to boost hope where many MDS, many government officials and some NGOs have already raised hands up in the air or are in plain denial. Foundations like PANDORA keep the hope alive which often makes dreams become reality. Thank you Sincerely C. Kesta Executive Producer / Director "The Chronic Pain Educational Documentary Series" http://www.head2toe.tv

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

By talking to Marly and by witnessing the results of her efforts.

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

Provide them with more funding

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Role: Professional with expertise in this field
Rating: 5 stars  

3 people found this review helpful

I am a board member and ex-President for a CFS/ME Association and I am proud to be working with Pandora to help bring awareness and education to CFS/ME/Fibromyalgia patients and the general public. Everyone at Pandora are dedicated, caring and professional individuals who are fighting hard to bring recognition to very misunderstood illnesses. They are always happy to reach out to anyone in need and work with any organization that helps people with Neuroendocrine-Neuroimmune illnesses.

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

Several advocacy and education efforts and conferences

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

give them more funding so they could further their mission....

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

What is unique about this organization?

Although many in the organization are fighting illness themselves, they still have the ability to reach out and help so many people...

When was your last experience with this nonprofit?

2010

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Rating: 5 stars  

2 people found this review helpful

P.A.N.D.O.R.A. is an organization that reaches out to help people with neuroendocrine immune disorders. Based in Florida, they are known both nationally and internationally for their amazing work. P.A.N.D.O.R.A. is there to help, to foster research, to share current data, to extend a hand in support. Other organizations addressing similar issues have benefited from the encouragement provided to them by P.A.N.D.O.R.A. As a member of one of those organizations, I am thankful for the assistance we have received, which in turn increases patient outreach.

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

the support extended to our organization

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

not manke any.

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