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Má fáthmheasadh do leanbh maidir le siondróm nó riocht neamhchoitianta, tá líon eagraíochtaí ann ar féidir leo faisnéis agus tacaíocht a thabhairt duit.
D’fhéadfadh suaitheadh mór a bheith ort má bhíonn neamhord neamhchoitianta ar do leanbh agus d’fhéadfadh a lán mothúchán éirí ionat dá bharr. Chomh maith leis sin, d’fhéadfadh sé fonn a spreagadh ionat níos mó eolais a fháil faoin riocht atá ar do leanbh. Tá eagraíochtaí ann ar féidir leo thú a chur i dteagmháil le teaghlaigh a bhfuil leanbh acu faoin riocht céanna, nó le teaghlaigh a bhfuil leanbh acu faoi riochtaí neamhchoitianta eile agus b’fhéidir go mbeadh na heispéiris chéanna ag na teaghlaigh seo agus atá agat féin.
Unique
Maidir linne
Tugann Unique faisnéis agus tacaíocht do theaghlaigh agus do dhaoine aonair atá buailte le neamhord neamhchoitianta crómasóim, agus do na gairmithe a bhíonn ag plé leo. Cé go bhfuil Unique lonnaithe sa Ríocht Aontaithe (UK), fearann siad fáilte roimh bhaill ó gach cearn den domhan agus déanann siad teagmháil le beagnach 200 teaghlach in Éirinn ag a bhfuil leanbh faoi neamhord neamhchoitianta crómasóim.
Tá taithí phearsanta ag na daoine a thugann cúnamh chun grúpa Unique a stiúradh maidir leis na neamhoird seo agus, dá bhrí sin, is maith is eol dóibh an dóigh a bhféadfá a bheith ag mothú. Is intuisceana gurb é céadfhreagairt bhunús na dtuismitheoirí a fháil amach má tá leanbh eile níos sine ann ar a bhfuil an neamhord céanna agus atá ar a leanbh féin. Cé go bhféadfaí seo a dhéanamh i gcorrchás, ní chiallaíonn sé go dtiocfaidh forbairt faoin mbeirt leanaí ar an dóigh chéanna. Féadfaidh comhrá le tuismitheoirí eile ag a bhfuil leanbh faoi neamhord neamhchoitianta crómasóim a bheith ina fhaoiseamh mór, áfach, agus féadfaidh sé na braistintí scoiteachta agus “Cén fáth mise?” a mhaolú.
Ár gcuid Seirbhísí
Cuireann Unique réimse seirbhísí faisnéise agus tacaíochta ar fáil, lena n-áirítear na cinn seo a leanas:
- líne chabhrach – tig leat teagmháil a dhéanamh le líne chabhrach Unique trí ghlao gutháin [(+44 (0) 1883 330766)], nó trí ríomhphost (info@rarechromo.org); tá na línte cabhrach ann do bhallteaghlaigh nua, do bhallteaghlaigh reatha agus do ghairmithe chun níos mó faisnéise a fháil faoin ngrúpa agus faoi neamhoird neamhchoitianta chrómasóim ar leith;
- bunachar sonraí – tá ríomhbhunachar sonraí cuimsitheach as líne curtha ar bun ag Unique a thugann sonraí faoin éifeacht saolré a ghabhann le neamhoird neamhchoitianta chrómasóim i measc a mball;
- leabhrán faisnéise – chuir Unique leabhrán i dtoll a chéile ar a dtugtar 'The Little Yellow Book' chun buntuiscint a thabhairt duit ar chrómasóim agus ar neamhoird neamhchoitianta chrómasóim agus chun níos mó eolais a thabhairt duit faoin ngrúpa. Gheobhaidh teaghlaigh nua cóip chlóite den leabhrán seo sa ghnáthchúrsa nuair a éiríonn siad ina mball de Unique. Tá an leabhrán seo ar fáil i mBéarla, i Spáinnis, in Iodáilis, in Ioruais agus i bhFionlainnis. Tá an leabhrán, The Little Yellow Book, sách mór agus féadfaidh sé cúpla nóiméad a thógáil é a íoslódáil.
Sonraí Teagmhála
Tig leat dul i dteagmháil le Unique tríd an bpost, trí ghlao gutháin, trí ríomhphost nó trí dhul ar líne chuig a suíomh gréasáin:
Unique,
PO Box 2189,
Caterham,
Surrey,
CR3 5GN,
An Ríocht Aontaithe.
Guthán:+44 (0)1883 330766
R-phost: info@rarechromo.org
Suíomh Gréasáin: www.rarechromo.org
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If your child has been diagnosed with a rare syndrome or condition, there are a number of organisations that can give you information and support.
Having a child with a rare disorder can be a huge shock and can stir up many emotions as well as a desire to learn more about your child's condition. There are organisations who can put you in touch with families who have a child with the same condition, or with families of children with other rare conditions who may be having similar experiences to you.
Unique
About us
Unique gives information and support to families and individuals affected by any rare chromosome disorder, and to the professionals who work with them. Although Unique is based in the United Kingdon (UK), it welcomes members worldwide and has contact with almost 200 families of children with rare chromosome disorders in Ireland .
Those who help run theUnique group have been through these experiences and so they have first hand knowledge of how you might be feeling. Most parents' first reaction, understandably, is to find if another, older child has the same disorder as their child. While this might be possible for some, it still does not mean that the two children will develop in the same way. However, just talking to other parents with a child with a rare chromosomal disorder can be a great relief and can help to ease feelings of isolation and "why me?"
Our Services
Unique offers a range of information and support services including its:
- helpline - you can contact the Unique helpline by telephone (+44 (0) 1883 330766) or email (info@rarechromo.org); the helplines are for new and existing member families and professionals to find out more information about the group and about specific rare chromosomal disorders;
- database - Unique has set up a comprehensive offline computerised database, which gives details of the lifetime effects of specific rare chromosomal disorders among its members;
- information booklet - Unique has put together a booklet called 'The Little Yellow Book' to give you a basic understanding of chromosomes and rare chromosome disorders and to tell you a little bit about the group. New families will automatically get a printed copy of this booklet when they join Unique. The booklet is available in English, Spanish, Italian, Norwegian and Finnish. The Little Yellow Book is quite large and may take a few minutes to download.
Contact Details
You can contact Unique by post, phone, email or by visiting its website:
Unique,
PO Box 2189,
Caterham,
Surrey,
CR3 5GN,
United Kingdom.
Telephone:+44 (0)1883 330766
Email: info@rarechromo.org
Website: www.rarechromo.org
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