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83 Reviews
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October 1, 2014

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October 1, 2014

So very impressed with this organization. It runs on a shoe string budget but reaches thousands every month. The support, empathy and information that is provided is remarkable. Being in the industry I know how difficult it is to get donations and keep moving forward when you don't "give financial help to others" but I can recognize true helpfulness and dedication when I see it!
July 18, 2012
1 person found this review helpful

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July 18, 2012
1 person found this review helpful

Provides hope and resources for those not having a specific diagnosis for potentially life threatening diseases. Thinks "outside the box" for clients. Ridiculously underfunded for the services being provided internationally. Efficiently and effective in the provision of services. Always provides responses to clients.

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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

When was your last experience with this nonprofit?

2012

June 30, 2010
1 person found this review helpful

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June 30, 2010
1 person found this review helpful

I have known Marianne Genetti professionally for more than seven years. I found her to be bright, compassionate and more than willing to help others find answers to their medical mysteries. INOD is a beacon of light for those lost in the complex, emotionally charged darkness one can feel when there is no adequate diagnosis, and thereby, no adequate treatment. I would love to see INOD supported generously and enable it to expand its reach to help those of us in need of diagnosis. Tomorrow, it could be me or you.

The Great!

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

some of my patients.

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 30, 2010
1 person found this review helpful

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June 30, 2010
1 person found this review helpful

It seems the more rapidly medical science advances, the more difficult it is to find the health information we need – for ourselves and for those we love. That’s where In Need of Diagnosis, Inc. (INOD) comes in. Today’s healthcare system, as we all know, is largely driven by health insurance. Do we have it? Does it cover the problems we are experiencing? Is there a better approach to the set of symptoms we are presenting? Where do we live? What is the experience of our primary care physician? Is there a family history of what ails us? What about all the media coverage on vitamins, exercise, living longer (and better)? Are our health expectations reasonable? Perhaps we need a fresh set of eyes. Perhaps we need INOD! INOD doesn’t diagnose or treat. INOD listens. And from that listening comes a ‘pattern’ . . . . . a possible new approach . . . . . a simple lab test that might have been overlooked . . . . a syndrome NIH would like to hear about . . . . . new research studies being undertaken by this or that clinic or research facility . . . . . symptoms “sound like” the Alzheimer’s Assn, Muscular Dystrophy, or other specialized non-profit who might help. In other words, a kind of medical information clearinghouse – and here’s the important part – with a real human-being interface. At INOD there is someone who will LISTEN. Marianne Genetti is the founder and current executive director of INOD. She herself suffers from an undiagnosed syndrome. She knows the pain and frustration of trying to make her legs carry her. Like all sufferers of chronic, disabling conditions, she may not be able to find a label – a “diagnosis,” if you will – for her own illness. Now a senior herself, she uses all the knowledge, contacts and expertise she has gained to help others with their search. If not for a diagnosis, or even a cure, then for large and small ways of coping. For Marianne and INOD, the life’s journey has purpose in helping others. To continue its work, INOD needs financial support and volunteers. Please contact www.INOD.org or call 888-894-9190 in Orlando, FL

The Great!

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

The commitment of INOD’s executive director in answering requests for assistance promptly and thoroughly and developing a strong working relationship with NIH and local/national medical authorities.

Ways to make it better...

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

Raise enough money to hire one or two paid staffers to assist in taking the organization to a more professional level. Non-profit organizations are a valuable commodity beyond their core mission. Today’s world requires professionalism of NPOs...

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What I've enjoyed the most about my experience with this nonprofit is...

Results can be measured in the number of e-mail letters from people (or their friends and relatives) whom Ms. Genetti has advised. It was my responsibility while employed by INOD to keep track of both in-coming and out-going e-mails and telephone calls.

The kinds of staff and volunteers that I met were...

I found the board members to be dedicated, informed and pro-active to the extent their careers and individual health permitted.

If this organization had 10 million bucks, it could...

It doesn’t need so much money but it does need enough to provide better working conditions to attract IT professionals needed to organize and collate the data management aspects of the organization. Quick retrieval of medical information is going to...

Ways to make it better...

Develop a training program to create a team of volunteers to assist Ms. Genetti in answering inquiries.

In my opinion, the biggest challenges facing this organization are...

Making INOD’s mission understandable and worthy of support by offering a human face to the business of healthcare in an increasingly expensive, high-tech and highly mobile society.

One thing I'd also say is that...

Develop a program, in partnership with an existing for-profit company, for people to marshal their medical records in encoded digital form. A small fee for this service would generate an income stream to help underwrite the cost of the program...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 24, 2010

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June 24, 2010

i never really thought much about problems with diagnosis that is until I found myself labeled as "undiagnosed". My symptoms did not fit the traditional model my physicians were most familiar with. So they could not name a disease nor give me drugs for it. Fortunately for me I finally found a physician who would listen to my story and correctly diagnosed me. But many others do not a ending to their story. INOD fills a void in our current illness care system by identifying the problems of specialization and advocating for individuals. The goals and objectives of INOD not only seek to improve the condition of individuals but of the healthcare system in general. The leaders of INOD are to be commended on their work.

The Great!

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

consultation about my condition

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 24, 2010

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June 24, 2010

As healthcare in the United States becomes more and more difficult to access, more mistakes are being made, and patients are suffering. Patients need to have more information than ever, and partiicpate in order to participate in their own medical decision-making. INOD, through Marianne Genetti, provides the right information at the right time, helping patients make those decisions, therefore making sure their healthcare is more accurately and effectively delivered.

The Great!

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

Working directly with Marianne to help her expand her reach.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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