Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
81 Reviews
1234.56795
| 1 2 3...8 |
Write A Review
April 10, 2013
1 person found this review helpful

more

April 10, 2013
1 person found this review helpful

i am mexican, wrote long ago for my daughter, russia angely, which has no diagnosis, I saw some doctors called in Washington and I am very happy because although we are pending a response I heard at least thank wing person I relate command with doctors and send a big kiss and hug god bless you always..

en espaƱol:
hola soy mexican ,hace tiempo escribi el caso de mi hija llamada russia angely, la cual no tiene diagnostico ,me llamaron la vieron unos doctores en washington y estoy muy feliz porque aunque estemos pendientes por una respuesta almenos fui escuchada agradezco ala persona que me relaciono con los doctores y mando mando un fuerte beso y abrazo que dios los bendiga siempre

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

October 14, 2012

more

October 14, 2012

First of all, to the person in Colorado whose 31 yr. old son with diarrhea, no appetite, etc. It sounds like your son could be suffering from neuroendocrine tumors that usually are very small and are very rare. His symptoms match those for people with "carcinoid'" and other neuroendocrine cancers. Secondly, INOD's service of trying to get an accurate diagnosis is lacking all over the U.S. I know because I've spent the last 14 yrs. trying to get an accurate diagnosis and treatment. To do so, I've gone all over the U.S. and seen 67 so called "specialists". That's the problem. Specialists specialize. They don't get the whole or big picture. There is a DESPERATE NEED for those who are educated and able to diagnose unusual diseases. So thanks to INOD for trying to fill in where no one else has!

More feedback...

How would you describe the help you got from this organization?

Some

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

October 13, 2012

more

October 13, 2012

Most people don,t have to spend years looking for a diagnosis and the appropriate help that comes with knowing what is wrong. Unfortunately I have been searching for answers for many years now. INOD hasn't gotten me in touch with anyone that has helped me but they are concerned and responsive. Maybe if they were given more publicity and acknowledgement more people like myself might find some answers!

The Great!

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

I have emailed people in this organization and received quick caring and lengthy responses trying to make some suggestions as to places or people to turn to.

More feedback...

Will you volunteer or donate to this organization?

Likely

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

Some

When was your last experience with this nonprofit?

2012

How did you learn about this organization?

found it researching for some "answers" online

October 13, 2012

more

October 13, 2012

Hi sir,Thank you for offering help. My son (31 years old) story of illness for 5 years with undiagnosed chronic gastroenterology ulceration associated with diarrhea.(small unbleeding ulcers at ilume spread with the time to duodenum and colon and stomach). 4 GI specialists in Egypt and USA can't diagnosed the disease but they gave him Crohns medication and intestinal TB and other medication without any improvement or remission.Currently have stable without medication since one year butlose weight and little appetite and diarrhea . What can i do to get help?I have all medical reports and images . sicerely your : Majeed Aldamah. Denver,CO,80231

More feedback...

How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Okay

When was your last experience with this nonprofit?

2012

October 11, 2012

more

October 11, 2012

Although I continue to suffer from my discouraging and debilitating maladies , I appreciate the existence of this organization which was willing to help and at least say, "Hey, we understand, and there are many, many others out there suffering, too." It's time to get the word out. Sometimes, 5 out of 5 brilliant doctors just don't know what is wrong with you.

Ways to make it better...

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

Get them more funding, especially for staff--they got back to me but because they are in high demand it took a bit.

More feedback...

How would you describe the help you got from this organization?

Some

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

October 11, 2012

more

October 11, 2012

I've had a vicious cough for over 20 years, all the whole seeking to find out the cause. INOD was as much in the dark as anywhere else. Even a week at the Jewish Health Center in Denver turned up nothing useful, though. I'm sure it's a synape syndrome. but INOD doesn't know anything about that.

More feedback...

How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2011

October 11, 2012

more

October 11, 2012

My husband has been on disability for 14 years. Many people ask "what is his disabillity" as he "looks" fine. the actual answer is that we dont know what his disability is because we have no DIOGNOSIS. He just acts in a way that would not allow him to work: he zones out, he becomes unconsious and awakens only to not know where he is. etc. NOT HAVING A CORRECT DIOGNOSIS MEANS NOT GETTING HEALED. INOD is a God send to many in this situation. They did a TV show like "House" to help figure out a diognosis but they didnt do it in real life until INOD. Why dont we have more of these places around the country because INOD can only handle such a few cases as their resources allow. The need is great!!!!!!

More feedback...

Will you volunteer or donate to this organization?

Unsure

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

Life-changing

When was your last experience with this nonprofit?

2011

September 26, 2012

more

September 26, 2012

When my husband had medical problems that baffled all the doctors, I took to the web. After hours of research I stumbled on "In need of diagnosis". The other members gave many suggestions and lots of support. It was bittersweet to join this community and realize that modern medicine was good at treating symptoms, but not at diagnosing the out of the ordinary diseases. Luckily for us we finally got a correct diagnosis at John Hopkins in Baltimore. My sanity was saved by this board. Thanks again.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2010

September 12, 2012

more

September 12, 2012

Approximately 4 years ago, I began to be beset with an array of non specific symptoms that gradually over time became increasingly more severe. I consulted an array of over 20 doctors including 3 UCLA full professors (Neurology, Endocrinology, and head and neck) and an MD at USC who was specifically assigned to obtain a diagnosis on my behalf all without any success. About a year ago, I happened to read an article in the health section of the Los Angeles Times describing a non profit, INOD, who assisted those who had difficulty in obtaining an accurate diagnosis. (Lamentably, the LA Times, for cost reasons discontinued their weekly health section) I e-mailed INOD describing my plight. Almost immediately, I received an e-mail response from Marianne Genetti, Executive Director of INOD. She indicated that an attempt would be made to make a diagnosis from the information provided. Ms Genetti subsequently e-mailed with a possible diagnosis of B-12 deficiency. Accompanying her e-mail was a case history, many references including references to The Functional Medicine Institute with the suggestion that I consult the Institute for references to local doctors. While B-12 deficiency was not the cause of my difficulty, an D.O. referred by the Institute was. I had a gluten sensitivity! This is an emerging field where gluten sensitivity is yet to receive the acknowledgement to which it is entitled. Without INOD I would still be suffering and I mean suffering. Ms Genetti almost immediately responded in a meaningful and helpful way to all my e-mails. Without her and INODs help I would not have been guided to a resolution of what had been a baffling enigma. I would give Ms Genetti and INOD an A plus and then some.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

September 9, 2012

more

September 9, 2012

My husband had been experiencing severe pain in his lower left abdomen for several months. He had x-rays, liver scans, colonoscopy, endoscopy many blood tests and examiniations by 3 doctors. No one could explain the pain. INOD was sympathetic to our needs but offered chiropractor or other form of healing. We didn't do either for different reasons. Although I kept questioning it at the time no one suspected that it could have been from Remicade infusions (for arthriits). However on October 31 2011 while having an infusion he had an allergic reaction and had to cease getting those infusions. About 3 months later the pain subsided and has never returned since. A good result but after many months of pain, tests, doctor visits and who know how much money was spent by our insurance company. We are just glad it is over!

More feedback...

How would you describe the help you got from this organization?

A little

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2011

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers