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July 1, 2011

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July 1, 2011

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.

The Great!

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

Not only have I received invaluable moral support, and reliable answers to tricky questions - I have referred many people to the website, and provided them the toll-free number for questions and support. I help run a HepC support group in California; one of the most valuable assets in my toolbox is this New Jersey-based organization! I have also been blessed with life-long friendships, from all over the U.S., and one in Canada!

Ways to make it better...

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

Keep it just the way it is!! - but provide more funding, so the Hepatitis C Association's good deeds can be expanded!!

June 29, 2011

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June 29, 2011

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.

The Great!

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

In many ways I have seen results, I have experienced the joy when a critically ill person learns they have hope and support from someone who has been where they are. The examples are too numerous to mention.

Ways to make it better...

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

If it ain't broke don't fix it.

June 27, 2011

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June 27, 2011

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.

The Great!

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

A world of support for people in all stages of HCV and its treatment.

Ways to make it better...

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

not change a thing.

June 19, 2011

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June 19, 2011

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.

The Great!

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

the months following my diagnosis, my 48 weeks of treatment, my 6 month waiting period to see if I was still responding and the rest of my life!!!

Ways to make it better...

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

Make it even more known throughout the world so more people could benefit from everything this site has to offer!

June 19, 2011

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June 19, 2011

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.

The Great!

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

I've been helped several times when a doc gives me new prognosis or diagnosis when there has been someone there that had been in the same situation in the past. The CEO also researched for a clinic in my area that specialized in my disease.

Ways to make it better...

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

I'd donate them money to continue to carry the torch and made the disease the organization represents. I believe in the work the organization is doing and would love to physically love to do more.l

June 17, 2011

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June 17, 2011

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.

The Great!

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

I've received results by being able to find up-to-date information at this site

Ways to make it better...

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

I would not change a thing!!!

June 17, 2011

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June 17, 2011

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.

The Great!

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

my daily life

Ways to make it better...

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

I would not change anything

June 17, 2011

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June 17, 2011

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

The Great!

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

I have worked with the Hep C Association in the development and implementation of their curriculum to train medical providers

Ways to make it better...

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

Double it's capacity

June 16, 2011

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June 16, 2011

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

The Great!

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

By learning more about HCV and teaching others what i have learned over the last decade

Ways to make it better...

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

I would not

June 16, 2011

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June 16, 2011

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.

The Great!

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

so many ways. It always amazes me that just a kind word can make someone feel so good. My health issues have been pretty serious, and the positive wishes of my friends have helped me through some very rocky times.

Ways to make it better...

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

Find a way to share coffee and donuts while we read. send PMs and post.

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