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2011 Top-Rated Nonprofit

Hepatitis C Association

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Nonprofit Overview

Causes: Diseases of Specific Organs, Health, Voluntary Health Associations & Medical Disciplines

Mission: Hepatitis C Association seeks to educate the public, create awareness, promote organ donation and offer support to patients living with hepatitis C virus.

Programs: Helpline for hepatitis c patients and their families. The organization provides support, crisis information, and referral services in partnership with "the support partnership", www. Help4hep. Org

hcv for patients-presentations at substance abuse clinics. The organization made presentations at 85 venues to approximately 1,700 patients.

patient advocacy including serving on fair pricing coalition (http://fairpricingcoalition. Org)

promotion of awareness through our website, www. Hepcassoc. Org, about hepatitis c, education about risk factors and necessity of protecting the liver hepatitis c, education about risk factors and necessity of protecting the liver hepatitis c, education about risk factors and necessity of protecting the liver

Community Stories

16 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

Hepatitis C Association is a wonderful educational and mutual-support organization that provides facts, not scare stories. The website features verifiable information, the latest news, message boards and a toll-free contact phone number.

The message boards serve a wide variety of people – all sharing a concern with the same thing, Hepatitis C and its treatment. It’s a safe place to share feelings, hopes, fears and successes. The ~Voices~ board has helped me - and countless others - get through some pretty tough and scary episodes.

HepC Association serves people who are considering hepatitis treatment, are on treatment, and those who have completed or discontinued treatment are all welcomed and embraced. Caregivers and support people find facts, answers, caring and encouragement.

In today's world, there are so many “new and groovy” diseases and so much conflicting information, it's important to have a reliable website for patients, doctors and care-providers to find a reliable knowledge base. This organization provides that information.

This is a wonderful place for anyone who is concerned with, or interested in Hepatitis C.

daylily

Professional with expertise in this field

Rating: 5

Sue and I have worked and have been on treatment together. The Simons are great caring people with an organization they should be proud of. They continue to work for HCV education and patient support in a time when others are closing their doors.

Client Served

Rating: 5

The best thing my Dr. did for me when I asked about HCV support was hand me the phone number which led me to the Hepatitis C association and their website; Voices. When I was first diagnosed I was in shock. I had no idea what I was dealing with and felt very alone. Finding the Hepatitis C Association helped me through my darkest early days and ultimately my treatment. The association is by far the most well-run and well- organized Hep C support group in the US offering sound advice from a high quality staff that is always willing to answer the phone or respond to a post. The support from others going through this disease in all of its forms and stages at Voices is amazing and I suggest this non-profit be considered a GREAT non-profit.

Client Served

Rating: 5

When first diagnosed with HepC, I searched for answers all over the internet with varying success. Then I found Voices at the Hepatitis C Association and I knew that I was home. I found the knowledge and support I needed to make informed decisions about my treatment. I've made numerous friends over the years and although I cleared the virus over 5 years ago, I still check in to offer support, compassion and advice and just to say hi to old and new friends.

Board Member

Rating: 5

Hep C Assoc. was there for me when I didn't know where to turn when I was diagnosed. I couldn't make sense of what was going on at that time. I turned to the internet and found this fantastic board with a fearless leader and compassionate members who quickly become your friends. They quickly took me under their wing and taught me far more than my doctors and clinics. If you have a personal problem, the members are there to lend a shoulder and share a hug. When I feel the world is beating up on me, I do there to find out that life has it's quirks and strange turn of events. This site saved my life. I would still be curled in the fetal position in my bed if it weren't for HepC Assoc.

Comments ( 1 )

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SusieS2011 06/19/2011

Maryann, you are a pleasure to work with and your contributions to other patients is much appreciated.

Client Served

Rating: 5

When I first found that I had HepC, in 2000, I wandered the internet looking for a place of warmth, caring and hand holding. I found all of those things at Hepatitis C Association and still go there looking for information and warmth, caring and hand holding.
Thank you Susie for your hard work.

Comments ( 1 )

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SusieS2011 06/18/2011

Thank you so much for your kind comments. Susie

Board Member

Rating: 5

It's great to have a place to go where people understand what your dealing with and give you moral support. Everyone has been so helpful in guiding me through my options.

Comments ( 1 )

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SusieS2011 06/18/2011

Thank you Feline. You have become a very important member of our message board. We look forward to seeing you there.

Randall P.

Professional with expertise in this field

Rating: 5

The Hep C Association provides education to medical providers, patients, caregivers and the general public. They develop educational programs for clinicians who treat viral hepatitis patients. They have a toll-free support line and an inter-active website where patients can share their experiences and support each other. Patient advocacy is their strong suit!

Most importantly, they are an active member of a larger coalition of national organizations which advocate for strong federal policy and program funding for both the prevention and treatment of viral hepatitis

Comments ( 1 )

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SusieS2011 06/18/2011

Randy, your continued support and your role as one of our favorite presenters, makes you very special to us. Thank you for your years of dedication and loyalty.

General Member of the Public

Rating: 5

Susie is such a help for all with hcv and livier disease....We need and use the site so we can share with others what we have been doing with our HCV.......All at the site pay it forward....We all love to help others..and we all love to learn more

Comments ( 1 )

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SusieS2011 06/18/2011

TIFF, YOU ARE PROBABVLY THE ONE THAT I KNOW FOR THE LONGEST TIME. YOU HAVE BEEN PAYING IT FORWARD FOR YEARS. YOU ARE APPRECIATED!

Volunteer

Rating: 5

Talk about an ostrich. When I was diagnosed it just slipped my mind that Hep C was a very serious virus. I kind of now think of it as "the gift that keeps on giving and it not eligible for regifting, no matter how much i hate it". Without the help and support of Susie and Den, and their untiring quest for educating, traveling all over the country to run seminars for professionals who may not know of the new medications and programs for the people that they serve, There is a forum for medical articles that keep us all up to date on research, new medications in the pipeline, clinical trials and compassionate programs that the pharmaceutical companies offer for patients who cannot afford to pay for treatment. There are forums for support, and off topic so that we can share other parts of our lives. There's a forum for photos so that we can share our families with each other, and one for jokes, to make us laugh.

Comments ( 1 )

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SusieS2011 06/18/2011

Judi, you have become a dear friend. The patients and caregivers who visit our site have greatly benefited from your presence. Thank you for ALL you do.

Client Served

Rating: 5

I have been doing treatment since 12/2010 and am a little over half way through with treatment. If it hadn't been for The Hepatitis C Association, I don't think I would have made it this far. The people on their forum are informed and friendly and are always there with a helpful word or just a shoulder if you need them. They are fantastic!

Comments ( 1 )

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SusieS2011 06/18/2011

Thank you for your lovely words. We wish you well with the rest of y9our treatment journey.

General Member of the Public

Rating: 5

This is such a worthwhile organization! Their edcuational materials are stellar - allowing caregivers to fully understand what their patients are going through. And to provide *personal* support through the toll free phone lines and the very successful message board - - you just don't see that all the time on such a consistent basis.

Comments ( 2 )

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SusieS2011 06/18/2011

comment already made.

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SusieS2011 06/18/2011

Thank you so much. I am very happy that we were able to help you give support to your family member.

Board Member

Rating: 5

I first called Susie back in 2002, crying on the phone, scared to death and planning treatment with a new drug called Pegasys. Susie spent an hour with me, helping me understand this terrible disease. She helped me cope through humor, friendship, and I always felt her depth of compassion and concern for me. We're neighbors, but mainly talk on the phone now. And then so many members have come & gone - wonderful folks mostly, most of them lost to SVR & better health. Sue has also been a caring supporter as I've lost a dozen friends to HCV over the years. Now ten years later, here I am, crying on the phone to Susie, scared to death & planning tx with a new drug called Telaprevir. May God help us all make the right choices about these complex new drugs. I'll always be thankful for Sue's honest way of caring, which she does so well. I'll always admire her character, her non-judgmentalism, and her emotional generosity. I'm sure we all feel the same.

General Member of the Public

Rating: 5

AWESOME! I went there with questions, and they were able to answer all of them or refer me to journal articles that could address my concerns. They were supportive - checking on me if they did not hear from me. The collection of articles available to consumers is very thorough, and is always getting updated! There is a genuine concern on the part of the staff at HCA! The website has been updated several times, and gets more and more user friendly.

Comments ( 1 )

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SusieS2011 06/14/2011

People appreciate the archives so that is why we keep the old news. The site is updated every time something newsworthy comes to our attention. Sometimes our webmaster gets overwhelmed with work and we have to wait "on line" til she gets to us.

Barbara D.

Volunteer

Rating: 5

This is an extremely worthwhile non-profit org. Hep C Assoc has it all figured out. Treating the people who treat people is a key element in recovery.

Comments ( 1 )

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SusieS2011 06/18/2011

Thank you Barbara. Your comments mean a lot to us.

General Member of the Public

Rating: 5

They have a flourishing message board that has helped thousands of people. In addition they provide education to medical providers, patients, caregivers and the general public. They also develop educational programs for clinicians who treat viral hepatitis patients. Patients can contact them via a toll-free support line and an inter-active website where patients can share their experiences and support each other.