PRIMARY GOALS OF THE INTERNATIONAL HUNTINGTON ASSOCIATION

- to maintain close liaison with the research scientists, who form the Research Group on Huntington's Disease of the World Federation of Neurology

- to develop and share information and resources among member countries, to avoid duplication of effort

- to assist in organizing and developing new and existing national HD organisations

- to cooperate with other voluntary health agencies and international health organisations

- to publish and distribute an international newsletter to all members and to representatives in those countries where no HD group is not yet organised.
 

GOVERNANCE

BIENNIAL MEETINGS TO DATE (2011):

*1977 - Netherlands
*1979 - England
*1981 - Belgium
*1983 - Canada
*1985 - France
*1987 - Italy
*1989 - Canada
*1991 - Wales
*1993 - USA
*1995 - Belgium
*1997 - Australia
*1999 - Netherlands
*2001- Denmark
*2003- Canada
*2005 - UK
*2007 - Germany
*2009 - Canada

The 2011 meeting will be in Melbourne (Australia)
 

  IHAMEMBERSHIP AND CONTACTS

The following countries are now represented by the IHA:

The IHA has also contact with representatives from the following countries working to establish an HD association:

LIAISON WITH SCIENTIFIC COMMUNITY

The research group brings together physicians and scientists from countries around the world. These individuals are seeking improved treatment and an eventual cure, through consultation and sharing of the rapidly increasing body of knowledge about HD. The first meeting of this group took place in 1967 in Montreal, Canada, with the late Dr. André Barbeau as host.
 

PREDICTIVE TEST GUIDELINES FOR HUNTINGTON'S DISEASE

In March 1993, the gene causing Huntington's Disease was identified on chromosome number 4. This means that individuals at risk for HD can now be directly tested to "predict" who will develop the disease. Prenatal testing is also possible. The decision about whether or not to take the predictive test is a deeply personal one. For some individuals this test will provide much desired information about their future. Others will choose not to undergo testing at this time, particularly as there is no effective treatment currently available.

Recognizing that medical, ethical, legal and social issues from the availability of predictive testing, recommendations concerning the use of a predictive test for the detection of HD were drawn up by a committee consisting of representatives of the IHA and WFN Research Group for HD.

The first predictive test guidelines were adopted by each of the organisations at their respective meetings in Vancouver, BC, Canada, June 30 to July 3, 1989, and published in the Journal of the Neurological Sciences (1989;94:327-332) and the Journal of Medical Genetics (1990;27:34-38).

Revision of these guidelines was necessary in view of the important research breakthrough announced in March 1993 of the discovery of the HD gene on chromosome number 4, characterized by an expanded trinucleotide repeat.

The revised Guidelines, have now been approved and published in Neurology 1994;44:1533-1536 and in the Journal of Medical Genetics (1994;31:555-559).
 

ESTABLISHED BENEFITS OF THE IHA

- Offering ongoing support to developing national lay groups

- Facilitating the sharing of resources developed in one country for use by others, to avoid duplication of scarce human and financial resources. A range of videotapes, manuals and resource materials for lay people and professionals is now available in several languages thanks to the generosity of member associations

- Fostering applied research and development of improved care strategies in such areas as: nursing, communication, swallowing, mobility, supportive housing and long-term care

- Encouraging basic and applied research, leading to increased understanding of the basic factors underlying HD and ultimately to improved treatment and an eventual cure. Tremendous strides are being made.
 

THE MARJORIE GUTHRIE FUND

The Fund was intended to cover the cost of a keynote speaker at future IHA meetings, the focus of these presentations to be innovative new strategies for care.

At the 1995 IHA meeting in Belgium, it was agreed that the Marjorie Guthrie Fund be expanded to support the critical international development work of the IHA. By expanding the mandate of the Fund, it is hoped that resources can be found and made available to assist with the development and support of recent and additional new lay organisations.
 

THE REMARKABLE HISTORY OF THE IHA

This meeting was followed by the first meeting together with the conference of the Research Group in the Netherlands in 1977 organised by the Dutch Huntington Society the "Vereniging van Huntington", where representatives of six countries were present.

The IHA was established at the international meeting in Oxford (England) in 1979, organised by the Huntington's Disease Association of the United Kingdom.

In 2003 was planned the World Congress on Huntington Disease in Toronto, Canada. It would have been the first fully joined meeting of scientist and representatives of members and contacts of the International Huntington Association.
Due to electricity drop out, the board of the IHA with support of scientists organized an improvised meeting.
The next meeting in Manchester (UK) will also be a joint meeting.

Now, in 2004, there are HD societies in 39 countries all over the world and contacts in another 16 countries.

Dr. Nancy Wexler, one of the leading HD researchers in the world, made the following comment in a speech at the Huntington Society of Canada's annual meeting:

"Individual people can make an impact, and you're a group like this all across the country you make a bigger impact, and when you're international, you make an even bigger impact. There is absolutely no question that the Huntington movement we're all part of is considered one of the most successful in the entire world. And what are we? Just individuals getting together and saying 'this disease cannot get me down, I'm going to conquer this thing'. And we're going to do it soon. We're going to do it in the lifetime of ourselves and our children."
 

The International Huntington Association and its members believe the IHA will be a key factor in achieving that goal.
 

For further contact:

Callunahof 8
7217 ST Harfsen
The Netherlands
(tel. 31 - 573 - 431 595)

Email:iha@huntington-assoc.com