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37 Reviews
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June 20, 2011

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June 20, 2011

I was diagnosed w/APS 10 years ago. I've had multiple DVT's and PE. I've never been to a doctor that seemed interested in answering my questions and most of the info I have came from my own research. This disease is scary and I've never had anyone to discuss my fears or answer my questions until I found this page. For years I've felt like I was all alone in this as family and friends simply do not understand how devastating APS really is. Now I have a place to go for info and support. I'm suddenly not alone anymore.

The Great!

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

Facebook

Ways to make it better...

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

none

June 18, 2011

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June 18, 2011

I was diagnosed with APS 2 yrs ago and am so lucky I found this organization on the web. The amount of information available is amazing and it's always growing. Doctors should be required to visit the website to better educate themselves! Then they would learn that APS has many symptoms. APS Foundation of America Inc also helps ease my frustrations by reading stories shared by other people with this disease. I'm so thankful for this foundation and all the amazing people that make it possible.

The Great!

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

This organization is like an online support group and has helped me in many ways.

Ways to make it better...

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

The only change I would make if I could.......would be to win the lottery and give 95% of it to this organization. I'd use the other 5% for my medical bills.

June 8, 2011

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June 8, 2011

About 2 years ago I was diagnosed with APS. Like others I had no idea what APS was . As I started to research what this illness that was I came across the APS foundation. Which truly has been a big help to me.Their website has great resources such as doctors that treat APS , articles and a newsletter with has lots of tips and stories of people that have APS. I'm so thankful for this foundation hearing some many stories about other people with APS has truly help me with dealing with APS.

The Great!

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

YES

Ways to make it better...

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

NO

June 6, 2011

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June 6, 2011

I was diagnosed with APS October 2010. When I first learned of my diagnosis I was scared and confused. The first thing that I did when I got home was throw myself into the internet to learn everything I could about APS. I came across APS foundation of America, and I have to say it was a sigh a relief. There is so much helpful information and it was written in a way that whoever was reading could understand it. I love the fact that they have a facebook, and on that facebook are so many people that have APS and can relate. I dont ever feel uncomfortable posting a quetstion because the people that are on there know what I am going thru and will not look down on me. I am greatful for a organization, it helps me in many ways understand my diagnosis and my family can go onto the site and get more of a insight of what I am going thru. In many ways it is my outlet when I am going thru my "down days". I am truely greatful.

The Great!

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

I have met many people who are also diagnosed with APS, there is a sense of connection with people on there since they know what I am going thru.

Ways to make it better...

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

I wouldnt change a thing.

June 6, 2011

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June 6, 2011

I was diagnosed with APS in 2002. I had never heard of APS until then.
I started searching for information, the library, the internet. I began to understand what I had but found no one else with this disease.
Frustrated I searched the web looking for anyone who could understand and help
me.
Finally I came across the APS web site and learned that a few more people had this disease. APS has given me the support I need to go on. It has offered information on drugs, genetic research, and treatments for APS. It has helped my family understand the disease. I don't feel alone anymore!

The Great!

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

Dealing with family and friends. I reccommend it to everyone I meet. It helps others understand the disease

Ways to make it better...

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

See that more advertising would be done. Most people (including some doctors) know very little about APS. TV campaign: 6 minutes, some health programs (Dr. OZ)

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?

Quite well

How did you find this group?

the internet

When was your last experience with this nonprofit?

2011

February 3, 2011

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February 3, 2011

I was diagnosed with APS in 2005. There were only a handful of physicians who knew about, let alone understood, the full impact this has on my life, and will have on my life, until my last day. Suffering with this not-well-known disease was difficult. I felt alone. I am thankful to have found the APS Foundation to have the support and resources to help me, my family, and even my employer, help understand this debilitating, silent, invisible disease.
As a patient, the support and understanding has helped my family and me better understand and cope with the sudden limitations placed on my life. The Foundation members are thoughtful, compassionate, educated, up-to-date, and have their "finger on the pulse," of any/all new updates we, as sufferers of this disease, need to know. Additionally, the APS Foundation is an excellent resource for any aspect of APS -- the patient or physician both can utilize. I am thankful for the foundation and its hard work and dedication to the sufferers and the cause.

The Great!

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

Being better able to cope with my diagnosis. Their counseling services and disease education helped my family understand the disease, and my limitations better. -- The same is true for my employer who was able to accommodate my "disability" by following my physician's recommendations. Without the APS Foundation, I would still be trying to convince my family and employer about my "invisible disease" and the limitations it places on me. With the APS Foundation's help, I am able to function in the world.

Ways to make it better...

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

Air a special on television: 20/20 and/or "60 Minutes." More media attention needs to happen. The more people who become aware, the easier it will be on those of us suffering from the disease. We "look" and "sound" "normal," the vast public needs to be educated about this disease. I would volunteer my story. It has tried to kill me twice, but I am still here!

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?

On the internet.

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

To communicate with others suffering with the same disease, not to feel alone.

When was your last experience with this nonprofit?

2010

January 24, 2011

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January 24, 2011

When my husband found out he had APS there was not a lot of information about it on the web. The APS foundation has not only been a great source of information, but because it's such a rare disease it's helped us not feel so alone.

The Great!

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

Information

Ways to make it better...

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

None

January 23, 2011

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January 23, 2011

I love being a part of this group. The support and information I have needed is always available through this group. The information is life saving for those who have to live with Anitphospholipid Antibody Syndrome.

The Great!

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

Provided my the necessary materials to leave in Drs offices. Also had the needed information to argue a treatment with my care givers.

Ways to make it better...

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

na

January 22, 2011

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January 22, 2011

I was diagnosed with this rare blood disorder a little over 20 years ago. Because it is rare, it is difficult to easily find reliable information or to meet people who share this same diagnosis. Through this organization's online community, I have learned more about my illness and gained friends that are able to offer support/advice when I am having challenges.

The Great!

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

In receiving a minimum of weekly postings from their Director, Tina Pohlman.

Ways to make it better...

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

hope to see it continue to grow in staff and services.

June 16, 2010

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June 16, 2010

The APSFA has been a great support to me and my family. I have learned more from their website, support forum and information packet they sent from me. I have found the staff to be super friendly and really caring about me. They have helped me a lot. I love that they send their newsletter out by email for free. Those are always informative and many of their medical advisers write in them everytime. Their articles are cited and my doctors have used the references to help me get better care. Words can not explain how much they have helped me. Thank you!

The Great!

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

the great service they have provided and excellent information and caring they have provided. I thank them for my life.

More feedback...

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

everyone is so honest, friendly and helpful and everything is cited. My doctors really take their information seriously.

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

the staff will go out of their way to help you to answer your questions and are willing to send you information to bring to your doctors.

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

run a large campaign educating the public & medical professionals.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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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

3 hours of volunteer time for this nonprofit will...

help with answering questions on the our support forums. You could also write a more cited technical article for our newsletter that could also be published in various places. You could also write and produce a YouTube video for the APS. You could also attend a conference, set up a booth for us at a session that the APSFA was invited to attend. Volunteer