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July 11, 2012

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July 11, 2012

Advocacy for Patients with Chronic Illness helped my son and I as we were dealing with a serious illness and had such a difficult time understanding the illness - 1st, and secondly understanding what help we were actually entitled to. It can be literally overwhelming to deal with a serious chronic illness, but it shouldn't be a fight on top of it to receive just a little bit of help. Advocacy for Patients supplies a wealth of information to help people like my son and I navigate the health care, insurance and medical community, which is critical when someone is seriously ill. I just don't know what we would have done without the guidance we received from this organization.

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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

July 11, 2012

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July 11, 2012

In fall of 2011 I began I PhD program for which I had a full fellowship. Due to reasons relating to my chronic illness, I took a leave of absence from school. I was wanting to know more about my legal rights if I could press the school to give me a half time fellowship and stipend. Advocacy for Patients with Chronic Illness researched my situation and gave me the scoop - basically there is not legal precedent and the the terms of the fellowship dictate full time status is required. Additionally APCI provided me information relating to health insurance since I lost my benefits when I withdrew from school and got denied from a regular independent plan. Also, in the midst of search for employment for myself I realized I was giving out too much information to potential employers and APCI gave me invaluable information about presenting myself, and not my chronic illness on job applications and interviews. Overall in 2012 this organization has had a substantial impact on my life during some difficult times for myself. It is a blessing to find a such a wealth of information relating to the legal ins and outs of living with chronic illness!

The Great!

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

My education and career decisions, health insurance, and hope to get a job a bit easier now.

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

A lot

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

How did you find this group?

searching on web

What, if any, change in your life has this group encouraged?

education and career change, more empowered with my health care management.

July 10, 2012
1 person found this review helpful

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July 10, 2012
1 person found this review helpful

This organization not only makes sure I am in the loop when issues pertinent to my illness through social media but every person who has an issue is treated like a person rather than a problem. I have had occasion to call the office and I was treated with respect and kindness. Even though my issue was a simple reference I have watched this organization long enough to say with confidence, lives have been saved that would have otherwise been lost all because of them and their tireless work for justice for people who are so often without a voice or whose voice is otherwise ignored.

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?

2012

July 10, 2012

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July 10, 2012

Advocacy for Patients with Chronic Illness helped me to live a normal life. Before receiving their assistance my life had become a shell of what it formerly was. My constant, excruciating head pain had removed me from my job, my social life, my family and even much of my marriage. Each day was a struggle made worse by my health insurance company's denials of the only promising treatment I had available to me. During his search for answers, my husband reached out to Jennifer Jaff, the Executive Director of Advocacy for Patients with Chronic Illness. She and her staff collected records and presented an appeal with me against my insurance company. When it was again denied, they did not stop working for me. The communication between them and my husband ,who worked as my representative, was incredible considering we were several states apart. They continued to push for my case and in the end it went to a third party reviewer who ruled in my favor. I had surgery in December of 2010 to have a nerve stimulator placed in my head and my head pain has been reduced 85-90%. I am able to enjoy my life again in a way I never imagined was possible just a few years ago. Advocacy for Patients with Chronic Illness does important work. I feel very blessed that we found them. I am amazed with how much they are able to do for so many with so few resources. Their efforts to provide free services to chronically ill people nationwide should be both applauded and supported.

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

July 10, 2012

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July 10, 2012

My husband has a chronic illness. Advocacy for Patients with Chronic Illness has helped us understand his rights as a patient not only with a pre-existing condition but also as a working chronicly ill patient. We are better prepared for the changes that are coming in our situation. We have been given literature on our rights, how to file disability when the time comes, and local, state, and federal resources. We also have Advocacy for Patients to turn to if something goes wrong. Where else could we have gotten all of that? We also have the opportunity to ask questions of talented and knowledgable professionals in the medical law field. All of this has been provided free of charge.

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?

2012

April 28, 2012
1 person found this review helpful

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April 28, 2012
1 person found this review helpful

Finding myself sick and wheelchair bound from severe tenosinovitis caused by Lupus plus the chemotherapy etc. was not helping anymore, my insurance comany (BCBS of NE) decided that Benlysta (which had been approved by the FDA) was an investigative treatment and would not be covered. They denied me and then denied the appeal from my rheumatolotist. I was just too sick at this point to fight them myself. Jennifer and Nicole took my case and forced the insurance company to cover the medicine that was necessary. It is a horrible state of affairs in my mind that the insurance company can not be trusted to be responsible, but on the other hand, thank God that there are people and a few intitutions like the Advocacy for Patients with Chronic Illness who can and are willing to be helpful. Rebecca

Ways to make it better...

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

Make it larger and more poweful

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?

2012

What, if any, change in your life has this group encouraged?

living

November 1, 2011

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November 1, 2011

My son has crohn's disease and migraines. He is in junior high school in the New York City public school system, and it became clear to us that he needed accommodations in school. He was not doing well with his health, and was often absent. We requested a 504 plan, which is a plan to develop accommodations for students through the Americans with Disabilities Act. The school administration told us that they could not accommodate for him, and kept putting barriers to us getting a plan in place. I saw Jennifer Jaff's name as the author of the 504 template we were using, contacted her for help. She responded within 20 minutes to my email with such thoughtful advice. Every step of the way, Jeniffer has helped us deal with the school. She really understands the issues people with chronic illnesses are dealing with. She is intellegent, and a very good lawyer. I like that she helped us deal with the school effectively, while helping us avoid an uncomfortable confrontation with the administration. We absolutely love Jeniffer Jaff and her organization.

The Great!

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

Getting accommodations for my son in school.

Ways to make it better...

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

The only problem is having a staff that works out of Connecticut, and cannot travel often to work on cases face to face. But the organization does manage to work things out through conference calls and through all the other communication technology. So, though it would be great to have a lawyer in the same room with you, you still get great advocacy long distance.

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

How did you find this group?

I saw the group's name on a 504 template I got from the Crohn's and Colitis Foundation website.

When was your last experience with this nonprofit?

2011

October 19, 2010

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October 19, 2010

Advocacy for Patients with Chronic Illness, Inc is a wonderful organization run by a wonderful woman. JenniferJaff is a tireless and self-sacrificing person; a true mensch. I have a number of chronic illnesses and sometimes it can be overwhelming. However, I always know I can count on Jennifer for help, advice or just an ear when I need to vent. Trust me, I've done that many times. When you're chronically ill, sometimes it's hard for those who aren't to really get what you're going through. Advocacy does. It's great to have them in our corner. I've gladly recommended them to others.

The Great!

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

every dealing I've had with them. I've always received compassion and empathy and the advice I needed.

Ways to make it better...

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

find someone with the heart to increase the funding for this vitally-needed organization.

More feedback...

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

A lot

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

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

found Advocacy through their involvement with Lybba.

When was your last experience with this nonprofit?

2010

October 13, 2010

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October 13, 2010

Advocacy for Patients with Chronic Illness appealed my denial of disability retirement from the federal government and won. It wasn't just that. Jennifer Jaff made me feel like I wasn't a freak. Previously I'd worked for the IRS for nearly a decade. During that time I was a damned good employee, winning service awards, being relied upon by my managers to coach new employees, acting for my managers...I was a "golden child" until I got sick. Once I got sick, I was yesterday's trash. It hurt to be tossed aside. But Jennifer made me feel valuable. She made me feel like I deserved my disability retirement. She worked with me in writing the appeal. She made me feel human. I couldn't even begin to tell you how much that means to me. Winning the appeal was important; but feeling like I deserved it...Jennifer is an amazing person and her organization does amazing things!

The Great!

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

After being denied disability retirement in my initial application from the federal government I decided to use a lawyer. But the federal government is a weird system and fibromyalgia is a weird disorder and the lawyers I talked to were reluctant to deal with me. Jennifer Jaff stepped in and worked with to me to write an awesome appeal that was approved. It absolutely wouldn't have happened without her.

Ways to make it better...

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

Fighting for sick people is what Jennifer Jaff does best. If I were to make a change to the organization I would find a way to secure funding fo this organization so Jennifer can do what she does best. I think finding someone that can showcase what she does to the people who provide the funds for what she does would be awesome. That and moving the organization out of her house so she can rest....that would be a good thing. Jennifer inspires loyalty in the people that she helps. Wish we could help her!

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

How did you find this group?

Jennifer was some kind of advisor for Revolution Health. They pulled the funding from that, but Jennifer stayed on. I asked her a few questions about various lawyers I was dealing with and she asked me "why don't you try me? I'm free." and I did. And she was worth far more than I could have paid for!

What, if any, change in your life has this group encouraged?

Feeling like I'm valuable. Like I deserved what I was fighting for.

When was your last experience with this nonprofit?

2010

October 7, 2010

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October 7, 2010

This organization provides vital services and information that put simply, would not be accessible to it's target population. I have referred many friends and have never know anyone to be disappointed with the level of attention or speed in response. It is a totally unique organization with tremendous heart and soul. Truly a comfort to know I have Advocacy for Patients to turn to if need be.

The Great!

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

I am diagnosed with multiple disabilities and have sought legal advice in a number of challenging situations. I count on APCI's newsletters and social media to provide current information specific to disabled Americans including health care policy.

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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

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