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October 29, 2013

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October 29, 2013

What a wonderful organization! The information and detail of options that may lead to a diagnosis were just outstanding. While they are having a backlog in timely responding to the hundreds of help requests they get when the information arrived it was so very helpful. I am so blessed to have made this contact!

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 7, 2013
1 person found this review helpful

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September 7, 2013
1 person found this review helpful

INOD was conceived and started by someone who herself went time after time to doctors and was unable to get a diagnosis. Marianne's tireless passion to find answers for herself and others lead her to create INOD. Despite her death earlier this year, INOD continues to be supported by her estate, her family, and the many individuals she inspired.

What many of us consider an illness is just a symptom or byproduct, if you will, of something else - - the root cause. The hit show "House" probably best exemplified how a doctor identifying a medical problem can be akin to a police detective solving a mystery. Unfortunately for all of us, like on the TV show, most doctors are not Gregory House. INOD serves to help individuals to find their "House" so that they too can get the answers and hopefully the cure to what ails them.

The sad reality is that an undiagnosed illness and condition could happen to anyone of us and INOD could play the pivotal role in getting an answer.

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Would you volunteer for this group again?

Likely

For the time you spent, how much of an impact did you feel your work or activity had?

A little

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

July 30, 2012

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July 30, 2012

When I was 18 I found that if I walked fast for a length of time, my legs would stop working. They didn't hurt. They weren't numb. They didn't tingle. I just couldn't move them until I stood still for several minutes. Then I could again walk if I went slow. Each year, I walked slower and shorter distances until three years ago when I became unable to walk unassisted. Now I am 74 years old and I am still undiagnosed! When the doctors could not figure out what the problem was, they said it was psychosomatic. But I live alone so isn't as if there is someone to cater to me. I have also always worked (and still do) so it wasn't to get out of work. Diagnosis is still in the dark ages. New tools, new tests and new protocols for diagnosis are needed. Thank heavens INOD is championing the cause for those of us who are undiagnosed.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

July 20, 2012

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July 20, 2012

I have suffered from being undiagnosed for many years. To discover a group of willing, experienced, compassionate survivors who have educated themselves to make the path of the undiagnosed behind them easier speaks volumes for the staff at INOD. We will join hands until we have exhausted all avenues to assist the undiagnosed in finding the care they need.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 29, 2010
1 person found this review helpful

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June 29, 2010
1 person found this review helpful

During my time with INOD I was a donor/volunteer and utilized my writing talents to assist in their brochures and pamphlets For me personally, INOD has given not only me the insight but also the ability to read from others what INOD has given to them in their hour of need and that is “hope”. There are many health care professionals who not only know their medical expertise, but these professionals have the talent of sharing their knowledge and wisdom about many possible medical solutions unknown to the common man/woman. Marianne Genetti has studied for many years the problems which she has encountered about her studies of the body chemistry and the vitamins and minerals which most of us have no knowledge. Sometimes just a small use of a vitamin or mineral with the correct protein or whatever can re-generate a hormone or whatever within the human body to assuage or correct a disorder which seems monumental when it really becomes manageable by the addition of a vitamin or protein which is ingested or injected into the body.

The Great!

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

see below

Ways to make it better...

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

see below

More feedback...

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

(answer to below) I will answer the question pertaining to if INOD had ten million dollars it could become visible to the general public all over the USA within North America and also to the residents of South America and Canada. Many...

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

abnormalities can be easily remedied by the body chemistry and the interactions thereof. Sometimes taking a Vitamin B Complex or another vitamin can bring relief to a person who has suffered for decades about a condition which they have been tolerating.

Ways to make it better...

(answer to below) In my opinion, the biggest challenge facing INOD is the lack of publicity & common knowledge. Everyone has heard of the American Heart Association or the American Cancer Association, but only a miniscule amount of people know about INOD.

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

The local newspapers & magazines are reluctant to publish anything about INOD locally as INOD does not possess the rightful link/connection to the community. Any monies could be used to advertise this non-profit organization & hire the necessary staff to

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

do INOD justice. Only a handful of volunteers operate this agency for no financial gain but only for the promise that INOD will get out to the public domain. INOD knows of many physicians and other healthcare professionals who are to share their knowledge

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 28, 2010

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June 28, 2010

While filing lots of complicated medical information I could hear Marianne Genetti on the phone with callers who had evidently been to doctors and labs and still didn't know what was wrong with their health. She is a good listener and is well-read. She also knows from long personal experience some good suggestions for a kind of doctor, a specific doctor, a test or a study, or helpful information that the person may not have already learned in their own medical struggle. This seems to bring hope to so many individuals who badly need it. She wants a single formal field established in diagnosis to help every person with any disease.

The Great!

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

By hearing what transpired when people called in while I was in the office and by receiving help and support in regard to my own diagnosis.

Ways to make it better...

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

Help it grow and have sufficient money to train additional staff.

More feedback...

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

There is a nice 'feel' to the work INOD does. I appreciate the new information I am getting.

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

Caring and competent

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

Have a big impact on the medical field to sensitize them to the need for more accurate and more timely diagnosis --- and for the need for a specialty in "Diagnosis".

Ways to make it better...

If I personally had a more extensive medical background.

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

Money and growth

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

INOD needs more resources in staff, handouts, networks and publicity so they can better support the needs of their clients.

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 28, 2010

more

June 28, 2010

This is a great organization that cares about people who are desperate for hope. Individuals who have undiagnosed illnesses can receive encouragement and the strength to continue when all feels hopeless.

The Great!

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

I was present when a call came in from an individual who is undiagnosed and nearly lost hope. She received gentle encouragement to continue her quest and reassured that she is not alone.

More feedback...

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 23, 2010

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June 23, 2010

My experience on INOD has been pretty good. I am able to "blog" about my ongoing undiagnosed condition and other members respond with suggestions or offer support. I feel very fortunate that I found this online support group. Knowing I'm not the only one dealing with an undiagnosed condition gives me hope that someone out there can help me.

The Great!

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

the members forums and discussion groups.

Ways to make it better...

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

have highly-trained physicians who deal with undiagnosed conditions actually get involved and help members more. Be it with advice or referrals

More feedback...

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

communicating with other members about my condition.

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

I did not meet any staff members

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

possibly do more research on undiagnosed conditions or hire physicians to communicate with it's members for for in-depth advice.

Ways to make it better...

I was able to communicate with someone highly trained in diagnosing those with chronic undiagnosed conditions.

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

the lack of communication from physicians.

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

I am grateful for INOD because I've met others out there like me and now I don't feel so alone.

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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