My Nonprofit Reviews
dnaidu
Review for In Need of Diagnosis, Orlando, FL, USA
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
More Feedback
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.
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...
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
