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Welcome

Huntington's Disease Association of Ireland (HDAI) provides consultation, information and individualised support to those diagnosed with Huntington's Disease (HD), their families and their health care team.

Information on HD

Understanding Behaviour, Caregivers Guide and Physicians Guide are now updated, contact the office if you require an information pack to be sent out.

Annual Respite Weekend

Our Annual Respite weekend takes place in Cuisie, Co Roscommon in conjunction with a Members Meeting and Annual General Meeting. See Q2 10 newsletter for a report.

Membership

If you are affected by HD you are welcome to avail of our services. Become a member and receive publications and information regularly

Create Awareness

If you would like to help Create Awareness or take part in a Fundraising Event on behalf of HDAI we would be happy to hear from you.

Research News

Charles Sabine gives an update from CHDI Therapeutics Conferences - Feb 2018 and Apr 2017

Gene Lowering advances - Ionis and Roche announce (11/12/17) that the first human trial of a huntingtin-lowering drug Ionis-HTTRX sucessfully lowers harmful huntingtin protein in the nervous system and is safe and tolerated. Read the HDBuzz article to find out more. Listen to the December 2017  Morning Ireland interview with Anne (family member) and Dr Ed Wild, UCL.

 Click on the logo to access reliable research news.

HDAI Annual Members Meeting and Respite weekend

          

June 8th - 10th , Cuisle Co. Roscommon. For information email info@huntingtons.ie

HD Papal Audience May 18th Vatican, Rome

Pope Francis gave a message of solidarity and hope to people with HD, their families, researchers and clinicians at the historic Hddennomore HD Papal Audience in Roma on May 18th 2017. "We are here because we want to say to ourselves and all the world HIDDEN No MORE". Read Pope Francis message to the audience and global HD community. "It was an incredibly moving and overwhelming experience to actually meet Pope Francis and shake his hand. His kindness and compassion were shining through...It was also wonderful and very humbling to meet other HD families, especially those from South America. Overall it was an experience we will never forget"  Mary, Irish family member.  See Event Highlights,  meet HD families from South America via Hddennomore and see a feature in HDAI's Hope Annual .  HD Advocate Charles Sabine explains What is HDddennomore?

HD Seminar Presentations March 4th 2017

  Dr Ed Wild, Dr. Niall Pender, Professor Orla Hardiman

Enroll - HD 

Enroll -HD www.enroll-hd.org is a world-wide observational study for HD family members. Dr Niall Pender leads  Enroll-HD site at Beaumont. For more info watch the Information videos below and contact the study site email : enrollhd@beaumont.ie

Enroll Study                          Nationwide 15/6/15 (8 mins in)

               

Support People with Huntington's Disease

 

HDAI Membership

Complete and return the form by post or by email to info@huntingtons.ie. Click the Donate Now link above to subscribe online.

HDAI Merchandise

HDAI Hoodies - click on Easy Pay button above to order

HD TV Features:    

RTE TV's Morning Edition         TV3 Ireland Am

          

Check out HDAI's Facebook Page


Neurological Alliance of Ireland (NAI)- Promoting Awareness

NAI's campaign We Need Our Heads Examined calls on government to tackle critical lack of rehabilitation services for people with neurological conditions.

Crisis in neurology services highlighted Report on National Survey of Neurology Services 2015

HD features in video : Ireland Gets a Red Card for Neurological Care

Support Meetings

2018 - Dublin February 3rd  Roscommon February 17th, Cork March 24th, December 2nd, Limerick April 14th, . Contact HDAI for venue and info: 1800 393939

RESPITE Weekend and AGM June 8-10th 2018 Cuisle Roscommon

Donate or Sponsor a Fundraiser

Click on the MyCharity.ie link on right to donate or sponsor a HD Fundraiser

 Visit to Aras an Uachtarain

President McAleese hosted HDAI in Aras an Uachtarain on April 20th 2010 to mark our 25th Anniversary. President McAleese commented:
"While I am aware of the deep sorrow and pain this disease brings to each affected family, I want to commend you for the courage and perseverance many of you espouse".

Staying active delays HD

http://www.abc.net.au/news/stories/2010/05/13/2898852.htm?section=justin By Samantha Donovan Fri May 14, 2010
Melbourne researchers have have found that leading a more active lifestyle can delay the onset of symptoms.