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Huntington-kór

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An inherited brain condition that slowly affects movement, thinking and mood.1 There is no cure yet, but treatments can help manage the symptoms.1 Symptoms usually start between ages 30 and 50, and get worse slowly over several years.1 Each child of a parent with the altered gene has a 1 in 2 chance of inheriting it, and a gene test can show who has it.1

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Where research stands todayFrissítve: 2026. nov. 11.
Trial-stage treatments you can join–open now
in Egyesült Államok
Studies published in the last 12 months9315 in people · 69 in animals · 9 in the lab
Szervezetek, amelyek segíthetnek5organisations
in Egyesült Államok
Offer tissue or dataGive a sample or your health data to research.Treatments outside Egyesült ÁllamokWhere it is offered, and who pays.“Miracle cure” fact checkerSaw a cure online? Check it before you pay.

Trial-stage treatments and research studies you can join

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Treatments approved outside the EU

Medicines for Huntington-kór approved in the US or Japan that are not approved in the EU.

Checked on 2026. nov. 11. in the official lists of the US (FDA), Japan (PMDA, approvals since April 2004) and the EU (EMA). 2 uncertain matches are left out.

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Your health insurer may pay part of the cost, sometimes all of it. This depends on your insurer, your plan and the country, so always ask your insurer before you go. For planned care in the EU, the EEA and Switzerland, ask about form S2.

Support organisations

Patient organisations and helplines in Egyesült Államok, for you and your family.

Huntington-kór organisations in Egyesült Államok

  • Genetic and Rare Diseases Information CenterPatient groupAll of Egyesült Államok

    Az NIH genetikai és ritka betegségekről tájékoztató központja (GARD): megbízható információ betegeknek és családoknak honlapon és kapcsolati központon át.

    rarediseases.info.nih.gov
  • Huntington's Disease Society of AmericaPatient groupAll of Egyesült Államok

    Amerikai nemzeti önkéntes egészségügyi szervezet a Huntington-kórral érintett családokért: támogatás, oktatás, ellátóközpontok és kutatás.

    hdsa.org
  • National Organization for Rare DisordersUmbrella organisationAll of Egyesült Államok

    Amerikai nemzeti ritkabeteg-szövetség, betegszervezetek tagságával: oktatás, betegsegítő programok, ritkabetegség-adatbázis és szakpolitikai érdekvédelem.

    rarediseases.org

Általános segítség – Egyesült Államok

Bármilyen betegséggel élőknek: betegjogok és jogsegély, lelki elsősegély-vonalak, hospice és palliatív ellátás, ellátás egy másik uniós országban, betegszervezetek ernyőszervezetei.

Egyesült Államok

  • 988 Suicide & Crisis LifelineHelplineAll of Egyesült Államok

    Amerikai nemzeti, éjjel-nappali, ingyenes és bizalmas lelkisegély-vonal öngyilkossági krízisben vagy lelki megrázkódtatásban: hívás vagy SMS a 988-ra, chat.

    988lifeline.org
  • MedlinePlusPatient groupAll of Egyesült Államok

    Az amerikai Nemzeti Orvosi Könyvtár (NIH) ingyenes, közérthető egészségügyi tájékoztató szolgáltatása betegségekről, gyógyszerekről, életmódról.

    medlineplus.gov

Nemzetközi

  • European Patients' Forum (EPF)Umbrella organisation

    Európai betegszervezetek és nemzeti betegszövetségek ernyőszervezete.

    eu-patient.eu
  • International Alliance of Patients' OrganizationsUmbrella organisation

    Minden betegségre kiterjedő betegszervezetek nemzetközi szövetsége, amely a betegközpontú egészségügyet támogatja.

    iapo.org.uk

Ernyőszervezetek (nemzeti szervezeteket fognak össze)

  • European Huntington AssociationUmbrella organisation

    Nemzeti Huntington-kóros egyesületek ernyőszervezete: összeköti az érintett családokat Európa-szerte, figyelemfelhívás, tájékoztatás és a kutatás támogatása.

    eurohuntington.org
  • EURORDIS – Rare Diseases EuropeUmbrella organisation

    Több mint 1000 ritkabeteg-szervezet szövetsége, országonkénti ritkabeteg-segélyvonal-listával.

    eurordis.org/information-support/rare-disease-help-lines
  • International Huntington AssociationUmbrella organisation

    Világszövetség, amely a Huntington-kórral élőket, a veszélyeztetett családtagokat és a szakembereket a hazai egyesületekhez kapcsolja; HD Focus hírek és segítség helyi egyesületek alapításához.

    huntington-disease.org

Offer tissue or data

There are three ways to help research move faster.

Give tissue or bloodA biobank stores your sample so many research teams can use it.No open programme yet
Share your health dataA patient registry collects your health data, without your name, for research.How to join
Take part as a healthy volunteerStudies also need people without the disease, for comparison. Family and friends can help.Volunteer

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About Huntington-kór

What is it?

Huntington's disease is caused by a change in a gene called HTT.2 A small part of the gene is repeated too many times, and the protein it makes becomes harmful and builds up in nerve cells.2 Over time this damages the parts of the brain that control movement, memory and thinking.1,2

It runs in families: each child of a parent with the altered gene has a 1 in 2 chance of inheriting it, and anyone who has it will get the condition in time.1 Symptoms usually start between ages 30 and 50; a less common form starts in childhood or the teenage years.1,2 About 3 to 7 in 100,000 people of European descent have it; it seems to be less common in people of Japanese, Chinese and African descent.2

The first signs

Sometimes other people find the changes in your behaviour and personality easier to notice.1

  • trouble concentrating, planning or remembering;1
  • low mood, depression or anxiety;1
  • changes in personality, such as being irritable or acting on impulse;1
  • small twitches or jerks you cannot control (chorea), and clumsiness.1

Some of these signs are common and can have other causes, so having them does not definitely mean you have Huntington's disease.1

How doctors find out

Your GP sends you to a neurologist (a doctor who treats conditions that affect the brain) for tests.1 If a parent has it or you have symptoms, you can choose to have a genetic test, usually only from age 18.1 Testing is your choice: some people do not want to know, especially before they have symptoms, because the condition cannot be prevented.1 A genetic counsellor can help you decide.1

Jelenlegi kezelés

Medicines and therapies to ease the symptomsForrás: NHS

Will it get worse?

Yes, it gets slowly worse over time, and how it affects you depends on your symptoms and how quickly they get worse.1 Later on, swallowing and speaking get harder, muscles become stiff, movement slows, weight drops and mood changes get stronger.1 It affects how long you live. Most people live for many years after symptoms start: with the adult form usually about 15 to 20 years, and with the childhood form usually about 10 to 15 years.1,2 In time, people need help with daily living.1

Medicines: what helps, and what to watch for

No medicine can stop the disease getting worse.1 Treatment aims to keep you comfortable and independent for as long as possible.1 Your care team can offer antidepressants for depression, medicines for mood and behaviour changes, and medicines for the twitching and jerking movements (chorea).1

Exercise and therapy help too

Your care team makes a care plan with you.1

  • physiotherapy for problems with movement;1
  • occupational therapy for daily tasks;1
  • speech and language therapy;1
  • talking therapy, such as CBT, for depression;1
  • genetic counselling, to understand what the diagnosis means for you and your relatives.1

Family, planning ahead and support

Huntington's can affect plans for the future and decisions about starting a family.1 Your doctor can explain what it may mean for you and your family.1 If you or someone in your family needs help with daily living, you can find out about social care and support options.1 Local or online support groups let you talk to others in the same situation, and national charities, such as the Huntington's Disease Association in the UK, support people with the condition, their families and carers.1

Is there a cure?

Not yet.1 No treatment can stop the symptoms getting worse today, and it cannot currently be prevented. Treatment aims to help you manage the symptoms and stay comfortable and independent for as long as possible.1

Általános tájékoztatás a felsorolt forrásokból, nem orvosi tanács.

Gépi összefoglaló publikált kutatásokból · forrásokkal és dátumokkal · 2026-11-11

Források

  1. NHS: Huntington's disease
  2. MedlinePlus Genetics: Huntington disease

olvasva: 2026-11-11