IN NEED OF DIAGNOSIS INC (INOD)
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I searched for healing from a debilitating undiagnosed chronic illness for more than 10 years. My journey eventually led me to philosophies, treatments and techniques that helped to vastly improve my life. I was fortunate to meet Marianne at a time when I was looking to share all that I had learned about health and healing...I was so inspired by her desire to give back and help others, that I created a website (HealWithHope.com) and got involved in other ventures that are geared to empowering others to find healing in their own life
The Great!
I've personally experienced the results of this organization in...
Living with an undiagnosed illness can make you feel lost and alone...INOD offers support, encouragement, and vauluable information people desperately need to turn their lives around!
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2009
Marianne Genetti, the founder, is extremely dedicated to INOD. I have helped Marianne with publicity and in trying to get the word out about INOD and to help them accomplish their mission goal.
The Great!
I've personally experienced the results of this organization in...
just hearing Marianne's stories about the people that call in and the different avenues that she is able to tell them about to look for help.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
I had been suffering from a disease for over 7 years, and after going to many doctors, I decided to go to NOR.s conference in hopes to find a doctor or member that could find out my illness. After contacting various doctors and representative at NOR and not having found anyone that could help, I was ready to give up. Them I met with the Founder of INOD and she told me my illness was a rear disease,she helped me, she researched my symtoms, and my medical records, and have me the hope and guidance I desperatelly needed. I went to the right place and was told by the doctor I have iosonophylia phasiatia. I am on the medication and treatment and I am doing great. All thanks to the help of Ms. Genetti of INOD.
The Great!
I've personally experienced the results of this organization in...
see above
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How frequently have you been involved with the organization?
About once a year
When was your last experience with this nonprofit?
2010
About a year ago, I found INOD on the web. They told me about about glycogen storage disorders and a six hour glucose tolerance, as an unexplored option to my low at blood sugar levels (62), and severe fatigue...Then I never heard from then again! Then in June 2010, INOD e-mailed me, and asked me to write a review for them, so they could get funding...I emailed them back asking how INOD could help me. I wanted to know more about INOD. I am still undiagnosed, and am becoming disabled (with muscle pain and stffness and trouble walking). I also have a stomach infection (H.PYLORI). The antibiotics did not help, and the doctor refuses to re-test me. I cough all up sputum all the time. (I lost two jobs, because of my illness, and have to work part-time, sitting down, and I am geting in debt. But, INOD did not reply with any suggestions about how they could asist me! I also sent INOD a copy of a letter I gave to the hospital asking why the infectious disease doctor did not re-test me for H.PYLORI or give me a sputum culture, after I had abnormal blood tests for infection. I was disapointed with their lack of response or concern.
The Great!
I've personally experienced the results of this organization in...
The only help INOD gave me was when I first contacted them, over a year ago...when they nformed about blood sugar tests, that my doctor never did.
Ways to make it better...
If I had to make changes to this organization, I would...
Have more patient stories posted on their website.
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What I've enjoyed the most about my experience with this nonprofit is...
I don't know...I expected more from them...INOD has a list of advisory board members (doctors and nurses), on their website, and no one helped me with my questions, or gave me advice.
The kinds of staff and volunteers that I met were...
I contacted INOD online, and did not meet with any volunteers or staff. The only person I had contact with was Marianne Genetti (President).
If this organization had 10 million bucks, it could...
With funding, INOD could start an undiagnosed data base for patients, and have their staff doctors assist in diagnosing them, as well as act on their behalf as an advocate.
Ways to make it better...
If I knew more about the cause of my illness, I could have asked informative questions.
In my opinion, the biggest challenges facing this organization are...
INOD needs to have more information available to people who contact them.
One thing I'd also say is that...
Too many patients are at the mercy of the medical system. Up to 98,000 patients die each year from medical errors. This is a fact. Undiagnosed patients need all the help they can get!
How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
2010
I think that INOD is a much needed service. There are not enough of these kinds of organizations out there. We who are undiagnosed go in desperate search for help. Because of them I have found another new doctor to try out in my search for help.
The Great!
I've personally experienced the results of this organization in...
I am seeing a new doctor.
Ways to make it better...
If I had to make changes to this organization, I would...
Give them more money for even better success.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
the direction it had taken me in my own problems.
The kinds of staff and volunteers that I met were...
kind and caring.
If this organization had 10 million bucks, it could...
provide services exclusively to undiagnosed clients.
Ways to make it better...
They had more finances to work with.
In my opinion, the biggest challenges facing this organization are...
funding!
One thing I'd also say is that...
It helps to know they are out there.
How frequently have you been involved with the organization?
One time
When was your last experience with this nonprofit?
2010
I love this site. In 2008, my son feel ill with an undiagnosed disorder. I often felt all along in my battle to obtain medical services for him. When I found this site I got connected to other parents of undiagnosed children and to resources for my son. I instantly felt supported. I contacted the site for information and was connected to doctors across country. I was compelled to design a presentation about my son's illness as a vehicle to provide information without hundreds of pages of medical records. The site asked me if they could use my presentation as a model for other parents to follow. I felt like I was not only helping my son, but other parents as well. I am so glad to have found this site and I support anything that it does. Thank you for supporting me as well.
The Great!
I've personally experienced the results of this organization in...
I have felt supported in unmeasurable ways.
Ways to make it better...
If I had to make changes to this organization, I would...
Provide more services for parents if possible.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
Support Given
The kinds of staff and volunteers that I met were...
GREAT!
If this organization had 10 million bucks, it could...
help parents more with medical services.
Ways to make it better...
The doctors suggested would have taken my son's case.
In my opinion, the biggest challenges facing this organization are...
Money
One thing I'd also say is that...
They are very supportive.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
My mom and I have been to dozens of doctors including specialists over the years. We've had countless tests done and doctors tell us they are "stumped" and that we are "complicated cases". After we leave, they don't spend time researching the literature or calling colleagues to get an answer for us. They are only paid for their 15, 30 45 min. or hour long appointment. They have no incentive to go beyond that to find a diagnosis for their tricky patients. The patients who live without a diagnosis and their family members who watch them suffer and possibly die have a huge insentive to research the problem on their own and then take the information to the next doctor. INOD gives patients and their families a comprehensive site in which to search many rare disorders. We don't have to purchase expensive books, or leave our home to do research at a library. We can stay home and research and print from the comfort of our homes and some people can not leave to do this extra research because they are caring for a loved one who has an undiagnosed disorder. Without this site, more people will go longer without an answer. I have spent countless hours combing through the site and once or twice we thought we find the answer. Without this site, we wouldn't even have HOPE of finding an accurrate diagnosis. Some people get to a point, where the doctors feel that they have done everything they can - and so they stop and just try to manage the symptoms of a nameless diagnosis. We don't want to settle for that. We hope to find an accurrate diagnosis so that it can potentially be cured and we can resume the quality of life that we once had. This site is very valuable. I have it marked as one of my "favorites".
The Great!
I've personally experienced the results of this organization in...
we thought we had an accurrate diagnosis. We printed out the material and took it to the specialist who suggested that it was worth a try. Accurracy of the diagnosis would come if she responded to the treatment medication, which did not happen.
More feedback...
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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