Get Rare Aware briefing - HSE West and North West

Get Rare Aware is a campaign from Rare Diseases Ireland (RDI), the national alliance for voluntary groups representing people affected by or at risk of developing a rare disease. A rare disease is a disease that affects fewer than one in 2,000 people.

We are asking politicians and public representatives to take urgent action to address the inadequate newborn heel prick test screening services provided in their first few days of life to the over 50,000 babies born in Ireland each year.

• Ireland screens newborn babies for less diseases than 70% of European countries.
• 5 years of promises and only 1 disease added to the newborn screening panel.
• The lives of ~200 babies born in Ireland each year would benefit from early diagnosis and treatment.

HSE West and North West provides health and social care to Donegal, Galway, Leitrim, areas in the west of Cavan, Mayo, Roscommon and Sligo.

At 12.30pm on Wednesday, 22nd May 2024 we will be holding an online launch of the Get Rare Aware campaign for people living in HSE West and North West. At the launch, you will hear from Vicky McGrath, CEO of Rare Diseases Ireland, and others on the importance of the newborn screening heel prick test for early diagnosis and treatment.

Our member organisations, who support people living with rare diseases and their families, will be in attendance at the event.

Find out more about Get Rare Aware at getrareaware.ie.