Dear Friends,  We have planned actions to support Ukrainian HHT patients in this moment of serious crisis.  At a European level we are coordinating to help patients still in Ukraine.  We want to communicate with you about those who have recently arrived and will arrive as refugees in Ireland.  This statement is about them.

  •  We are working with Rare Diseases Ireland who collaborates with all the institutions in charge of refugees. We are working to indicate the most suitable locations to place Ukrainians with HHT so that they will be placed near our National HHT Centre in Mercy University Hospital, Cork. 
  • We have pre-alerted the HHT Centre and have activated an email dedicated to HHT refugees – refugee@hhtireland.org – and with the help of translators we will give them all the assistance they need to receive care and support. 
  • We have created a small English-Ukrainian dictionary with useful words about HHT (you can download the document here)

The real challenge is making sure these patients find us so we can help them.  And that’s where you come in!  We have prepared a letter in English and Ukrainian that you can send to your Mayor who is responsible for refugees in your area. If there are HHT patients among the refugees in your area, when they get this letter they will be able to get in touch with us. We therefore ask you to download LetterToRefugee and send it to your Mayor with the following accompanying letter:  Dear Mayor, I am contacting you with a request that you forward the attached letter to the Ukrainian refugee families in our area. It contains very important information in case there are rare disease patients who need help and references in Ireland. Thank you in advance for your cooperation. 

We thank you for your help. All together we can ensure that our Ukrainian Rare Diseased brothers and sisters have all the necessary assistance 

The Board of HHT Ireland