IN IRELAND
Rare Diseases Ireland:
HHT Ireland is a member of RDI – Rare Diseases Ireland – which is a platform for bringing together patient advocacy groups concerned with rare diseases in Ireland. RDI was instrumental in drafting the first ever Irish National Plan for Rare Diseases.This plan was subsequently published by Dept of Health in 2014.
RDI (in collaboration with two other health networks) also developed and published An Easyguide to Rare Diseases in Ireland in February 2020. The media and Dublin’s Lord Mayor Tom Brabazon, along with many Patient Organisations including HHT Ireland were all invited to attend the launch in the Mansion House.
The Easyguide is aimed at:
- Government & Political Parties
- Department of Health & HSE
- Health care professionals
- Media Organisations
- People concerned about rare diseases, including family members, carers and those living with a rare disease.
Rare Disease Office:
As a result of relentless lobbying by members of RDI, the HSE established the National Rare Disease Office in 2015 as recommended in the first Irish National Plan for Rare Diseases. This Office is located in the Mater Hospital, Dublin, where HHT Ireland stock their HHT Booklets & Flyers in the Information Booth on the ground floor.
It is sometimes difficult to find accurate and useful information about rare diseases and so the Office aims to bridge the information gap and to answer any questions related to -:
– Rare Disease
– Expert clinics in Ireland and across Europe
– Patient Support groups
– Research projects and clinical trials
– European Reference Networks and cross-border care
– Social care supports.
The Office staff are healthcare professionals with experience working with people with rare diseases. They do not operate a clinic and cannot diagnose, treat or coordinate patient care. However they will do their best to help you get the information you need.
IN USA
CureHHT’s mission is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT. Since its inception in 1991, Cure HHT has been working tirelessly to raise awareness about HHT, improve treatments, and increase patient access to care.
Cure HHT connects with researchers unraveling the mysteries of HHT and discovering potential therapies for patients around the world.
Cure HHT hosts a HHT International Scientific Conference every two years and HHT Ireland is well represented by the attendance of members from HHT Europe. It is hoped in the future that HHT Ireland will be able to send their own representatives in person to these International Conferences.
CureHHT have a very informative website, including a section for webinars. Invites are issued to those who have signed up to receive them. The live webinars are recorded and made available to everyone for reviewing afterwards. The sharing of information is very much encouraged by CureHHT.
IN EUROPE
HHT Ireland travelled to Paris in 2015 where we joined the newly-formed HHT Europe Federation – a federation created by HHT Patient Organisations in Europe, including Italy Spain France & Germany. Today there are now 12 member states in HHT Europe.
HHT Europe is funded by membership fees from its members and a small grant from Eurordis – a European umbrella group for Patient Organisations in Europe.
HHT Europe holds an annual face-to-face meeting with the host country rotating each year. The seminars are produced and presented by its members. Guest speakers are also invited by the host to share information on their specialties eg Orphan drugs, Clinical trials, new treatments available, etc.
Our HHT Ireland Understanding HHT Booklet & HHT-Flyer were originally created & published by HHT Onlus (S Italy). However as each new member joined the Federation, each was given permission to translate into their mother tongue, keeping the same style & information.
Our School Guide 2020 also originated from HHT Onlus.
Without the successful collaboration with HHT Europe, HHT Ireland would not have this powerful information for our families and friends.
Our membership & friendship with HHT Europe is invaluable.
