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February 28th is Rare Disease day. This is a day for our rare community to celebrate their uniqueness and raise awareness of conditions most people have never heard of. RARE Ireland is a network for rare families in Ireland. Established in March 2017 by two mothers of daughters with rare conditions it remains Ireland s only support network for families living with rare disease. It was set up to improve the quality of life for families living with rare conditions, to connect families and to bridge the gap between diagnosis and receiving a genetics appointment. Ireland has one of the worst genetic services in Europe and parents often wait up to two years after receiving a diagnosis for their child to be given adequate information on how this condition is likely to impact their child. The support of RARE Ireland and its members makes this part of the journey less isolating for families.

Jack osheaNathan carterSean osheaHoly family school in charlevilleRare diseaseSeano sheaHoly family schoolRare irelandDisease dayPresident higginsAras an uactharainபலா ஓஷேஆநாதன் கார்ட்டர்சீன் ஓஷேஆபரிசுத்த குடும்பம் பள்ளி இல் சார்லவில்ரேர் நோய்