News and Events
17th International Conference on Human Retrovirology: HTLV and Related Viruses HTLV 2015
To be held June 18 to 21, 2015 in Trois-Islets, Martinique, France (French West Indies). The conference will offer an overview of current biomedical research, epidemiology and clinical research in important areas linked to HTLV.
Find out more at
http://www.17thconferencehtlv.sitew.fr/#FOCUS_on_HTLV_2015.A
http://www.meetingoutremer.com/v1/htlv/
To be held June 18 to 21, 2015 in Trois-Islets, Martinique, France (French West Indies). The conference will offer an overview of current biomedical research, epidemiology and clinical research in important areas linked to HTLV.
Find out more at
http://www.17thconferencehtlv.sitew.fr/#FOCUS_on_HTLV_2015.A
http://www.meetingoutremer.com/v1/htlv/
Rare Disease Day outreach at York Hospital. Top row: Kristy Blakeborough and Shaan Bassi, bottom row: Fabiola Martin, Dani Ungar and Philip Kerrigan
York marks International Rare Disease Day, 28th Feb 2015
Taking place in the York Hospital foyer, information and research on rare diseases was displayed and scientists and clinicians from the University and York Teaching Hospital were on hand to talk to the public about their research and how they provide care for different conditions.
The diseases featured in the event included Cystic Fibrosis, Human T Lymphotropic Virus, Rett Syndrome, Lowe Syndrome, African Sleeping Sickness, Congenital Disorders of Glycosylation and Neuroblastoma. Research about Rett Syndrome, HTLV and Congenital Disorders of Glycosylation are recipients of funding from the Centre for Chronic Diseases and Disorders (C2D2), and scientists and clinicians, as well as patients and volunteers, were available for informal chats about these conditions.
Find out more at http://www.york.ac.uk/news-and-events/news/2015/events/rare-disease-day-event/
XII International Symposium
Find out more about the HTLV symposium "We are pleased to invite you to the XII International Symposium of HTLV in Brazil and IV Paulista Symposium of HTLV that will be held in Rebouças Convention Center, São Paulo, Brazil in December 1st to 3rd, 2014. Featuring the theme HTLV, the meeting will cover different issues and initiatives" at http://iier.com.br/congresso/
Find out more about the HTLV symposium "We are pleased to invite you to the XII International Symposium of HTLV in Brazil and IV Paulista Symposium of HTLV that will be held in Rebouças Convention Center, São Paulo, Brazil in December 1st to 3rd, 2014. Featuring the theme HTLV, the meeting will cover different issues and initiatives" at http://iier.com.br/congresso/
HYMS Senior Lecturer in HIV Medicine and Honorary Consultant in Sexual Health and HIV Medicine, Dr Fabiola Martin, has become a member of the Rare Disease UK (RDUK) management committee.
In support of her membership of RDUK, Fabiola Martin is planning a nationwide patient survey exploring patients’ experience of living with a rare infection and to facilitate James Lind Alliance (http://www.lindalliance.org/) priority setting up partnerships for different rare infectious diseases, including HTLV, in the UK to bring together patients, carers and clinicians together to identify and prioritise the top ten ‘unanswered questions’ about the effects of treatments they agree are most important.
Find out more at http://www.hyms.ac.uk/about-us/news-centre/headlines-and-press-releases/news-article?t=rare-disease-uk-(rduk)-role-for-fabiola
In support of her membership of RDUK, Fabiola Martin is planning a nationwide patient survey exploring patients’ experience of living with a rare infection and to facilitate James Lind Alliance (http://www.lindalliance.org/) priority setting up partnerships for different rare infectious diseases, including HTLV, in the UK to bring together patients, carers and clinicians together to identify and prioritise the top ten ‘unanswered questions’ about the effects of treatments they agree are most important.
Find out more at http://www.hyms.ac.uk/about-us/news-centre/headlines-and-press-releases/news-article?t=rare-disease-uk-(rduk)-role-for-fabiola
HTLV Patient Forum, September 2014
On Friday 19th September 2014 a HTLV patient forum meeting will be held at St Marys in London, from 11am-2pm. Please feel free to join and contact us if you require any further information or have any questions
On Friday 19th September 2014 a HTLV patient forum meeting will be held at St Marys in London, from 11am-2pm. Please feel free to join and contact us if you require any further information or have any questions
Clinical Management Guide for patients with HTLV, June 2014
Brazilian guide ( just In portuguese for now)
The Guidelines for the Clinical Management of HTLV infection was published today (2nd June 2014) on the Department of STD / AIDS and Viral Hepatitis website and can be accessed via the link: http://www.aids.gov.br/noticia/2014/departamento-de-dst-aids-e-hepatites-virais-disponibiliza-guia-sobre-manejo-do-htlv
This guide was joint work of the advisory group and the Ministry of Health, through the Department of STD / AIDS and Viral Hepatitis (Brazil). This material will be essential to guide health professionals regarding care of HTLV and its complications.
Brazilian guide ( just In portuguese for now)
The Guidelines for the Clinical Management of HTLV infection was published today (2nd June 2014) on the Department of STD / AIDS and Viral Hepatitis website and can be accessed via the link: http://www.aids.gov.br/noticia/2014/departamento-de-dst-aids-e-hepatites-virais-disponibiliza-guia-sobre-manejo-do-htlv
This guide was joint work of the advisory group and the Ministry of Health, through the Department of STD / AIDS and Viral Hepatitis (Brazil). This material will be essential to guide health professionals regarding care of HTLV and its complications.
Photo courtesy of Rare Disease UK/ Josh Tucker.
HTLVaware at the Houses of Parliament, Feb 2014
Dr and patient discussed HTLV and other rare diseases at a splendid event held at the Houses of Parliament. It is not often that HTLV is discussed at such a prominent location.
As part of Rare Disease Day, an annual international awareness-raising event launched by EURORDIS and its Council of National Alliances in 2008, Dr Fabiola Martin was invited to attend the Rare Disease Day 2014 reception at the House of Commons.
Attending with an HTLV patient Dr Martin represented rare sexually transmitted diseases at the event. Subsequently, Dr Martin was invited by the Director of Rare Disease UK , Alastair Kent OBE, to 'join in our work to raise awareness and help with the implementation on the UK Strategy'.
Dr and patient discussed HTLV and other rare diseases at a splendid event held at the Houses of Parliament. It is not often that HTLV is discussed at such a prominent location.
As part of Rare Disease Day, an annual international awareness-raising event launched by EURORDIS and its Council of National Alliances in 2008, Dr Fabiola Martin was invited to attend the Rare Disease Day 2014 reception at the House of Commons.
Attending with an HTLV patient Dr Martin represented rare sexually transmitted diseases at the event. Subsequently, Dr Martin was invited by the Director of Rare Disease UK , Alastair Kent OBE, to 'join in our work to raise awareness and help with the implementation on the UK Strategy'.
York Rare Disease Day Event, 28th Feb 2014
Clinicians, scientists, patients, nurses and University of York graduates mark Rare Disease Day on Friday, 28 February with a special exhibition at York Hospital.
HTLVaware was represented - individuals being informed about HTLV and offering the chance to ask questions and find out about other rare diseases.
Clinicians, scientists, patients, nurses and University of York graduates mark Rare Disease Day on Friday, 28 February with a special exhibition at York Hospital.
HTLVaware was represented - individuals being informed about HTLV and offering the chance to ask questions and find out about other rare diseases.
