American Association of Kidney Patients, Inc.

Rating: 4.13 stars   8 reviews

Issues: Cancer

Location: 3505 E. Frontage Rd. #315 Tampa FL 33607 USA

Mission: The American Association of Kidney Patients (AAKP) exists to serve the needs, interests and welfare of all kidney patients and their families. Its purpose is to help patients and their families cope with the emotional, physical and social impact of kidney failure, thereby enabling them to resume productive and satisfying lives. Founded in 1969, AAKP is a national organization of more than 12,000 members, including patients, family members, renal professionals, friends and institutional members. It is the only national kidney patient organization directed by kidney patients for kidney patients and reaches over 1 million patients per year with needed information about kidney disease.

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Community Reviews

Rating: 3 stars  

I have always received excellent service/help fron AAKP. No matter how silly or aggraveting I thought my question was, I always felt like the person on the other end was happy to help me. You could almost hear them smile.

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

Receiving information that I could actually use.

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

increase the length of the conferences. Set up local meetings where members could get together and discuess their illness.

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Rating: 5 stars  

1 person found this review helpful

My son has recently heard about the American Assoc of Kidney Patients from his cousin, Laura Chirichigno, whose business is Business Support Partners in the Tampa area. She and the executive director - Karen - got the information for my son. He's on dialysis 3 times a week because of Diabetes and we're trying to get him on the kidney transplant list at Tampa General. The AAKP is sharing information with us about the timeline and requirements for this.

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

The AAKP becomes very involved when someone contacts them.

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

none.

Will you volunteer or donate to this organization?

Definitely

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

A lot

How did you learn about this organization?

Business Support Partners in the Tampa area-Laura Chirichigno

When was your last experience with this nonprofit?

2011

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Rating: 5 stars  

Kidney disease is not rare. We all need a working kidney to live productively. AAKP is the organization that seeks to advise kidney patients--and their families--on how best to handle their disease at every stage of the process. AAKP educates and supports basic research. Both dialysis and kidney transplantation have improved remarkably over the close to 30 years since my diagnosis of polycystic kidney disease, a genetic disease.
Support groups,nutrition advice, and treatment options keep us aware. Progress is ongoing. I support AAKP.

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

many ways, both through education and support that continues to this day. I am almost celebrating my third year with a transplanted working wonderfully donor kidney.

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

encourage internet support groups

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Rating: 5 stars  

I had a kidney transplant in 1998 and have been a member of the American Associationi of Kidney Patients for most of these past 13 years. The stories and email updates I've been provided have been very beneficial to my overall treatment and success in maintaining a healthy transplant. I've often read articles that talk about innovative treatment plans or new medication options, and have brought these to my doctor's attention. (My doctor probably has the impression I'm so much smarter than I really am - but the AAKP website makes me look so good!) The diet and exercise suggestions, and human interest stories all provide great guidance and inspiration. The AAKP website is a great place to visit and pick up a lot of good information. I feel I'm not alone out there with my peaks and valleys of transplantation.

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

The help it has provided in keeping me healthy and maintaining my kidney transplant.

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

Prompt them to have more get-togethers in the Southern California area. It seems many of their conventions and meetings are outside of this area.

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Rating: 4 stars  

I have presented at a pt. meeting
for AAKP and it was a great experience for me. The patients and family members were so appreciative and the AAKP personnel so good. This is a valuable part of the dialysis world - resources, literature and support for our patients and their families. Keep up the good work.

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

My job and what they do for my patients.

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

Don't know of anything.

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Rating: 5 stars  

AAKP helps you understand your kidney disease and how to manage it. It helped me when I was diagnosed. There is very little information out there written in a way that the average individual understands. AAKP helped me to understand my chronic kidney disease, what it means and how to live with it. They produce magazines and all sorts of materials for people to read. They also have seminars to attend. Nephrologists (kidney doctors) do not have the time to educate. AAKP does a good job of that

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

I feel that I understand my disease although it is complicated. AAKP gave me that education.

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

I think it's great the way it is.

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Rating: 5 stars  

I received a kidney transplant on August 11,2010. The entire process was painless, professional, and successful.
Lifelink educated me as to what I should expect. They insisted on current testing so I would be ready when they called. Their doctors, nurses, and technicians were not only professional but also friendly and kind. I felt comfortable in their care.
My followup has also been easy. If I do have any complications, I can contact my nurse coordinator and she gets back to me quickly.
Visits for examinations and blood tests are very organized. I get instant feedback on how I'm progressing and any changes to my medication.
I have been so pleased with my experience with LifeLink and I would recommend the transplant center to anyone looking for excellent care.

I would recommend LifeLink to anyone

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

obtaining a transplant

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

do nothing

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Rating: 1 stars  

I tried to find out their position on illegal aliens receiving kidney transplants and dialysis services for FREE over Americans. To day, I have NOT received a response.

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

I traveled to Annapolis MD and was DENIED dialysis treatment even after my social worker scheduled for me to be there. Yet, illegals were welcomed in for their treatment.

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

The biggest change would be to make a stand against illegals receiving transplants & dialysis.

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

None

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

No

How do you feel you were treated by this organization?

Somewhat badly

How did you find this group?

E-mail.

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

I became an advocate for better treatment for Americans on dialysis.

When was your last experience with this nonprofit?

2011

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