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Support

Discovering that you or a loved one have Huntingtons Disease can be frightening and overwhelming but there is help at hand to provide support and information every step of the way.

At HDANI we have a small but dedicated team of staff and volunteers and while we cannot be there 24 hours a day 7 days a week we do our very best to provide as much help and support as we can.

We are not medically trained and cannot be experts at everything so we work closely with all kinds of health care professionals and other organisations to provide the tailored support and information you need. 

As HD is a rare disease some health and social care professionals won't have heard of it or had any direct experience so we can provide information,resources and training to help improve their understanding and ultimately get the best outcomes for patients and carers. We can speak with your GP, social worker, occupational, speech and launguage or physio therapist, pharmacist, care workers, counsellors or even your employers and help them understand the needs of you or your loved ones.

We are fortunate to be part of a global network of HD support associations who share vital information and resources. You will find lots of information on our website about HD as well as practical tips and advice about caring and planning for the future. We also have a range of resource aimed at various health and social care professionals to help guide them in their treatment and support of patients and families.

Finding Help

  • The first step is normally to see your GP who may provide a referral to the Regional Genetics Centre at Belfast CIty Hospital for HD testing or if you have already been tested you could ask for a referral to the Familial Movement Disorder (HD clinic) at Belfast City Hospital to see a HD specialist neurologist. 
  • Depending on where you live you may have access to follow up with a HD Specialist nurse or you may be added to the review list for a local neurologist.
  • Throughout the course of its journey HD patients will need to see a variety of health and social care professionals including neurologists, mental health teams, OTs, speech and launguage therapists, counsellors, podiatrists, dentists and others all of which should be accessible via your GP or social worker. 

It is important to stress that Association members are not qualified to dispense medical advice, however, many members of the Association are ‘experts’ in the daily realities of living with HD. HDANI can offer years of knowledge and experience to help you through any emotional and practical difficulties you may encounter.

If you would like to join the Association membership is FREE.