Public area - News, events, announcments - Topic started by UK CAB Moderator - April 21 2009, 11:11 am

Title: FYI - Press Release
Post by: UK CAB Moderator on April 21 2009, 11:11 am
Today sees the launch of, a new online support initiative for people living with HIV and AIDS, which uses the technology associated with on-line dating sites, to allow users to share experiences with others who have the same diagnosis, conditions and treatments.
For more information or to arrange an interview with myhealth.gen Director Thandi Haruperi, please contact Linda Rose by return email or on 020 7281 281.
PRESS RELEASE                                                 
For immediate release
Social networking technology offers patients unrivalled access to peer support
Launch of provides ‘HIV Patient support’ On-line
London. 21 April 2009., a new on-line patient ‘support’ initiative for people living with HIV and AIDS launched today. offers patients access to peer support wherever they may live; at a time of their own choosing; in privacy or in the comfort of their own home. has adopted the technology usually associated with on-line dating sites to allow users to interact with other users on the site, either on a one-to-one basis, or through joining a user group of similar interest. Users of the site are invited to create their own unique profile, which allows users to have total anonymity if required.
Commenting on the need for new support initiatives, Emma Colyer, Director Body and Soul, an HIV organisation that assisted in piloting the site said, “ offers the opportunity of a much needed peer support network for people living with HIV, including those who do not want to use group support, those who do not have access to local support, or simply those who are looking for an new ways to deal with living with HIV.”
“Whether it’s to seek or to offer peer support, or to simply learn more about others’ experience of living with HIV, Body & Soul would certainly recommend that people take a look at the site” she added.
In endorsing the site, Professor Margaret Johnson, Clinical Director HIV/AIDS Services, Royal Free Hampstead NHS Trust said, “Seeing people on a daily basis has brought home to me how important the issues of stigma and isolation are for anyone living with HIV. Myhealthgen is an important opportunity for people to help themselves and others to overcome some of the complications that can cause so many problems if not addressed early.”
Commenting on the site, Carl Burnell of Gay Men Fighting AIDS (GMFA) said, “ fills a real unmet need in HIV peer support. Our experience of website based support for newly diagnosed men demonstrates that on-line support can make a real difference to the lives of users. We are confident that the responsible on-going peer communication offered by will be a real success”.
Thandi Haruperi, Director of said, "As someone living with HIV, I have experienced the stigma and isolation that arises with a diagnosis. HIV is now a long term condition but the longer we live with it, the greater is the impact not only on our sense of isolation and discrimination, but on our self esteem and worth – be it at social, economical or political levels. This website could be a very useful tool to help overcome some of these problems". is now up and running and already has over 200 individual users.
Notes to editor
Sharing experience of a diagnosis or journey, understanding side effects, or just getting advice from others on how they have managed their condition are some of the unmet needs in HIV support for many. Identifying people who are living with HIV who appreciate the isolation that might come with a diagnosis and the uncertainty a diagnosis brings, is not easy for many people. offers a means of support for these people.
The site offers opportunity for individual contact and also contact through groups, where people with similar interests can come together and share views and experience.  These can be open or closed groups. can deliver more than just support. Experience has shown that better understanding about a condition leads to better self management and greater empowerment, providing clinical, social and mental health benefits.
Since January 2009, the website has offered tailored treatment information and advice to people living with HIV. Robert Fieldhouse, a respected patient advocate with considerable journalist experience, is available for consultation, providing advice and comment on questions from users. Robert will support people as they consider side effect issues, new medication and other related issues that arise from an HIV diagnosis. His advice complements guidance available from health care professionals. is a ‘not for profit organisation’ managed by volunteers. It has an Advisory Board consisting of members of Body and Soul, GmFA, Living Well, National Aids Manual and RestorEgo.
Body and Soul is a unique charity supporting children, teenagers and families living with or closely affected by HIV. Body and Soul’s holistic approach encompasses both peer and professional support and information, enabling people to face the challenges of HIV.
GMFA is the UK's leading gay men's health charity, reaching over 140,000 men with its interventions. It develops a wide range of health promotion, including web and print advertising campaigns, booklets, websites, community building events, a regular magazine and groupwork.
RestorEgo is a training and management consultancy with a difference. RestorEgo ’s philosophy  of learning and teaching from experience means that all its people work on subjects close to their heart to help others approach change and difference positively.  Besides health, RestorEgo delivers on personal and organisational change through one to one coaching; mentoring, speaking, group facilitation, training, and consultancy.

For more information about please contact Thandi Haruperi on 0208 6570555 or email

Title: Re: FYI - Press Release
Post by: Matt Williams on April 21 2009, 09:41 pm
People might also want to check out the long-running and busy AIDSMEDS forums:

Title: Re: FYI - Press Release
Post by: Ben Cromarty on April 24 2009, 02:49 pm
...from what I can see, myhealthgen is a forum for a whole range of chronic conditions, not just HIV - you can join the HIV group, but that currently has much less than 200 users - more like 50 - though that may of course increase with time.