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National HHT Centre, Mercy University Hospital (Cork):

If you are suffering unexplained and recurrent nosebleeds, it is recommended you contact our National Centre for HHT in Mercy University Hospital, Cork by emailing margaretmurphyhht@gmail.com

There, a diagnosis for HHT will be evaluated by using the Curacao Criteria –

  • Spontaneous & Recurrent nosebleeds
  • Multiple redspots (Telangiectases) on fingertips, face, lips, oral cavity.
  • AVMs (ArterioVenousMalformations) in other organs
  • 1st degree relative with HHT by these criteria

 

Lung involvement:

A chest CT scan should be performed by a qualified radiologist who understands HHT.

Brain involvement:

An MRI of the brain should be performed  by a qualified neurologist who understands HHT.

Liver involvement:

Investigations for liver involvement are not usually required unless severe renal or cardiac issues exist.

If you have any suspicion please refer to your hepatologist who understands HHT.

Your Patient Organisation:

If ever you need to talk about your worries concerning HHT, it’s always good to know that there is help available. Our Patient Organisation HHT Ireland was set up to raise awareness of HHT and offer support to those families affected by HHT.

HHT Ireland consists of HHT patients and friends and offers a helpline at 083/4222302.

It is not a medical authority – but can offer support, empathy and guidance to anyone who calls. Any medical queries will be directed to our National HHT Centre in the Mercy Hospital Cork.

Social media is a very powerful tool for raising awareness and so HHT Ireland can also be found on these platforms. Join us and get support:

Facebook page

Facebook group (closed group)

Twitter

Instagram

HHT Ireland holds an Annual Patient Forum each year, creating an opportunity for patients and family members to meet others who share the same concerns about living with HHT.

If you are interested in joining this event you can reach out at info@hhtireland.org

This is a great place to share tips in relation to the management of our disorder but also to share contact details of Healthcare Professionals treating other patients with HHT.

Ireland’s Health Service (HSE)

The Health Service Executive (HSE) is responsible for the provision of health and personal social services for everyone living in Ireland, with public funds.

https://www.hse.ie/eng/

01 850 24 1850 or 01 240 8787

 

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National Rare Diseases Office

The National Rare Diseases Office provides current and reliable information about genetic and rare diseases to patients, families and health professionals. The office was established in 2015 by the Health Services Executive (HSE) and is staffed by healthcare professionals who have significant experience working with people affected by rare diseases.

www.rarediseases.ie

RDI – Rare Diseases Ireland 

Rare Diseases Ireland (formerly GRDO – the Genetic and Rare Disorders Organisation) is a non-governmental organisation with the mission to act as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare diseases.

 www.rdi.ie

RareDiseasesIreland

 

HHT Patient Organisations in the World

HHT SWEDEN – https://www.hhtsverige.org/

 HHT SOUTH ITALY – ONLUS  – www.hhtonlus.org

 HHT ITALY- ONILDE CARINI  –  www.hht.it

 HHT FRANCE – AMRO – http://amro-hht-france.org/

 HHT SPAIN – http://www.asociacionhht.org/

 HHT SWISS – www.hhtswiss.org

 HHT NORWAY – www.osler.no

 HHT GERMANY – MORBUS OSLER – http://www.morbus-osler.de/

 HHT FINLAND  – https://hht-osler.fi/

 HHT DENMARK – https://hht.dk/

 HHT EUROPE – www.hhteurope.org

 HHT USA – CUREHHT – https://curehht.org/

 

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