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SEARCH BY HEALTH CONDITION
Choose a category and/or scroll below to see the results…
- All
- Blood Disorders
- Cancer, Leukaemia, Tumour
- Craniofacial, Maxillofacial
- Dermatological/Skin Disorders
- Genetic, Immune, Chromosomal, Metabolic
- Heart/CHD/Transplant
- Infectious Diseases
- Injuries
- Liver/Kidney/Endocrine
- Mental Health
- Neurological/Neuromuscular/Neurosurgery
- Orthopaedics and Rheumatology
- Premature and NICU
- Rare and Undiagnosed
- Respiratory, Pulmonary, Lung
- Sight and Hearing
22q11 Ireland
22q11ireland.org | twenty.two.q@gmail.com| 087 7412856
22q11 Ireland aims to provide lifelong support for those impacted by 22q11/DiGeorge Syndrome. They provide information, peer support groups and information for patients and families.
ACT for Meningitis
actformeningitis.ie | info@actformeningitis.ie | 091 380058
Act For Meningitis provides practical and emotional support and information for those living with the impact of Meningitis.
Alpha-1 Foundation Ireland
alpha1.ie/a> | alpha1@rcsi.ie| 01 8093871
Alpha-1 Foundation Ireland provides information and services for people living with Alpha-1 Antitrypsin Deficiency (Alpha-1), and their families.
Angelman Syndrome Ireland
angelman.ie | admin@angelman.ie
Angelman Syndrome Ireland provides information and supports for families and caregivers throughout Ireland offering practical and emotional support. p>
Aoibheanns Pink Tie National Children’s Cancer Charity
aoibheannspinktie.ie | Contact form | 01 2401332
Aoibheann’s Pink Tie provides practical, social and financial supports to children diagnosed with cancer in Ireland and their families.
Asthma Society of Ireland
https://www.asthma.ie | reception@asthmasociety.ie | 01 817 8886
The Asthma Society of Ireland provides support and information for people with asthma and their families
Ataxia Foundation Ireland
afi.ie | info@afi.ie | 087 361 6616
Ataxia Foundation Ireland provides information, support and activities for individuals with Friedreich's Ataxia and other Ataxias, and their families.
Babies in Neonatal Care: A guide for parents
A guide for parents whose preterm/premature or unwell child may need care in a neonatal unit such as the Neonatal Intensive Care Unit (NICU).
Barretstown – Young Adult Programme – Cancer
https://www.barretstown.org/families-and-campers/teens-young-adults/young-adult-programme/ | info@barretstown.org| 045 864 115
Barretstown Young Adult Programme is a free residential programme, including meals and accommodation, catering to to young adults (aged 18-24). who have or have had cancer.
Bodywhys – The Eating Disorders Association of Ireland
bodywhys.ie | info@bodywhys.ie| Office- 01 2834963 | Helpline- 01 2107906
Bodywhys – The Eating Disorders Association of Ireland, is the national voluntary organisation supporting people affected by eating disorders and their families.
Brain Tumour Ireland
braintumourireland.com | info@braintumourireland.com| 085 721 9000
Brain Tumour Ireland provides information and support for people affected a brain tumour and their family.
Brittle Bone Society
brittlebone.org | admin@brittlebone.org| Contact form
Brittle Bone Society provide information for people with Osteogenesis Imperfecta (OI) and their families in Ireland and the UK.
Cancer Fund for Children
cancerfundforchildren.com | info@cancerfundforchildren.com
Cancer Fund for Children provides informal emotional, social and therapeutic support to children, young people and families impacted by cancer across the island of Ireland. Support is provided at home, in hospital and at the charity’s therapeutic short break centre, Daisy Lodge.
CanTeen Ireland
canteen.ie | info@canteen.ie | 01 8722012
CanTeen Ireland is a nationwide support group for young people between the ages of 12 and 25 years who have or have had cancer.
Childhood Cancer Ireland
childhoodcancer.ie | info@childhoodcancer.ie| 01 554 5655
Childhood Cancer Ireland is a national parent and survivor-led charity, providing information and support for children, adolescents, young adults, survivors and their families. Services include parent and youth workshops, peer-to-peer supports, Beads of Courage® and more.
Children’s Heart Foundation (UK Information Only)
Children's Heart Foundation UK provides excellent information and webinars for families whose child has a heart condition. – Note support services are UK only
Children’s Leukaemia Association
cla.ie | info@cla.ie| 021 4949801
The Children’s Leukaemia Association supports and assists families in any way during and after the course of on-going treatment.
Children’s Liver Disease Ireland
Children’s Liver Disease Ireland connects families affected by liver disease and shares useful information to help those who are on the same path.
ChildVision National Education Centre for Blind People
childvision.ie | info@ChildVision.ie
ChildVision provides a wide range of free services to blind, visually impaired and multi-disabled infants, children and young adults, and their families.
CHIME The National Charity for Deafness and Hearing Loss
chime.ie | rejoin@chime.ie | 1800 256 257
CHIME provides information, advice and a wide range of services and supports for people impacted by hearing loss or deafness, and their families.
Cleft Care Ireland
The Cleft Care website aims to educate you about the condition of cleft lip and palate and to reassure you that your child can lead a healthy and happy life.
Cleft Lip and Palate Association of Ireland
cleft.ie | info@cleft.ie| 087 131 9803
The Cleft Lip and Palate Association of Ireland provides support and information for parents of children affected by cleft lip and palate and to those directly affected by the condition.
Craniofacial Ireland
craniofacial.ie/ | craniofacial@cuh.ie| 01 878 4883
The NPCC (National Paediatric Craniofacial Centre) is based at Temple Street Children’s University Hospital, Dublin, Ireland. They provide treatment to children and young people with craniofacial conditions from birth to 16 years of age.
Crann – Solutions for families with neuro-physical disabilities (Cork, Kerry & wider Munster region)
| info@cranncentre.ie| 021 428 9267
Crann – Solutions for Families living with neuro-physical disability Crann provides solutions for children, adults & families living with neuro-physical disabilities at their centre in Co. Cork. They support children who live in Cork, Kerry and the wider Munster region with neuro-physical disabilities including Spinal Cord Injury, Spina Bifida, Hydrocephalus, Cerebral Palsy, Muscular Dystrophy, Osteogenesis Imperfecta, Arthrogryposis, Spinal Muscular Atrophy, Stroke, Multiple Sclerosis.
Cystic Fibrosis Ireland
cfireland.ie | info@cfireland.ie| 1800 832 022
CF Ireland provides information, supports and grants for people living with Cystic Fibrosis and their families.
Cystinosis Ireland
cystinosis.ie | mail@cystinosis.ie| 01 687 5758
Cystinosis Ireland provides support and resources to families with cystinosis, from the early stages of diagnosis through to adulthood.
DEBRA Ireland The Butterfly Skin Charity
debraireland.org | info@debraireland.org | 01 4126924
DEBRA Ireland provides support services to patients and families living with epidermolysis bullosa (EB).
Diabetes Ireland
diabetes.ie/ | info@diabetes.ie| 01 842 8118
Diabetes Ireland provides support, education and advocacy to people living with diabetes in Ireland, and their families.
Down Syndrome Ireland
downsyndrome.ie | info@downsyndrome.ie| 01 4266500
Down Syndrome Ireland provides information and supports for individuals with Down Syndrome and their families through their network of 25 branches throughout Ireland.
Dravet Syndrome Ireland
dravetsyndromeireland.org/ | info@dravetsyndromeireland.org
Dravet Syndrome Ireland provides support and information for families affected by Dravet Syndrome and other severe genetic epilepsies in Ireland.
Dystonia Ireland
dystonia.ie | info@dystonia.ie| 01 492 2514
Dystonia Ireland provides information and support to people living with Dystonia and their families.
Epilepsy Ireland
epilepsy.ie/ | info@epilepsy.ie| 01 455 7500
Epilepsy Ireland provides a wide range of supports and services for people living with Epilepsy and their family.
Erb’s Palsy Ireland
erbspalsy.ie | info@erbspalsy.ie| 087 761 0098
Erb's Palsy Ireland provides information and support for families and sufferers of Erb's Palsy.
Fidelma House – Leukaemia Unit Mercy Hospital Cork
cla.ie/fidelma-house | info@cla.ie| 021 4949801
Fidelma House is a home-from-home accommodation, close to to the Mercy University Hospital, Cork, which the Children’s Leukaemia Association can offer to families while their child is being cared for in the Children’s Leukaemia Unit.
Fragile X Ireland
fragilexireland.org | Contact form
The Irish Fragile X Society provides support and information for families caring for individuals with Fragile X.
Hand in Hand Children’s Cancer Society
handinhandcharity.ie | support@handinhand.ie| 087 660 0103
Hand in Hand provides free practical and emotional support services to families affected by childhood cancer throughout Ireland.
Heart Children
heartchildren.ie | info@heartchildren.ie| 01 8740990
The national charity supporting people of all ages with Congenital Heart Disease to live life to its fullest.
Huntington’s Disease Association of Ireland
huntingtons.ie | info@huntingtons.ie | 01 872 1303
The Hun22tington’s Disease Association of Ireland provides information, support and advocacy to people impacted by Huntington's Disease and Juvenile onset Huntington’s Disease.
Irish Cancer Society
Irish Cancer Society | supportline@irishcancer.ie| 1800 200 700
The Irish Cancer Society provides free services to all those affected by cancer, including children and their families.
Irish Childrens Arthritis Network- iCAN
icanireland.ie | icanireland@gmail.com| 086 828 9817
iCAN provides support and information for children affected by Juvenile Idiopathic Arthritis (JIA) and other rheumatological conditions, and their families.
Irish Ehlers Danlos Syndrome (EDS) Foundation
facebook.com/IrishEDSandHSD/ | annedmicks@gmail.com| 087 602 5361
The Irish EDS Foundation raises awareness and offers support for those diagnosed with Ehler Danos Syndrome or Hypermobility Spectrum Disorder or seeking a diagnosis in Ireland
Irish Haemophilia Society
https://haemophilia.ie | info@haemophilia.ie| (0) 1 657 99 00
The Irish Haemophilia Society provides supports to people living with haemophilia, von Willebrand's and other inherited/inheritable bleeding disorders, and their family.
Irish Heart Foundation
irishheart.ie/ | info@irishheart.ie| 01 668 5001
The Irish Heart Foundation offers a range of support services for people and their carers after a heart event or stroke.
Irish Kidney Association
ika.ie | info@ika.ie | 01 620 5306
The Irish Kidney Association are dedicated to meeting the needs of renal patients of all ages and their families and carers, living with and affected by end stage renal disease. These needs are spread across all aspects of life – medical, social and psychological.
Irish Neonatal Health Alliance
inha.ie/ | info@inha.ie| tel: 085 1920 602
The Irish Neonatal Health Alliance provides information and support for parents with a baby born prematurely or receiving care in the NICU
Irish Skin Foundation
irishskin.ie | info@irishskin.ie| 01 486 6280
The Irish Skin Foundation (ISF) is a national charity dedicated to improving quality of life for people living with skin conditions by providing information, support and advocacy
Little Hearts Matter (UK)
Little Heart Matters provides information and support for families who have received a single ventricle heart condition – or half a working heart. . – Note support services are UK only
Little People of Ireland
Little People of Ireland (LPI) is the national charity in Ireland for people with dwarfism related conditions, providing information and support.
Marfan Syndrome Support Group Ireland
https://www.marfan.ie | info@marfan.ie|
Marfan Syndrome Support Group provides information and support for people living with Marfan Syndrome and their families.
Mental Health Commission Ireland
mhcirl.ie/ | info@mhcirl.ie| 01 636 2400
The work of MHC includes regulating in-patient mental health services and setting standards for high quality services across mental health services. MHC also provides useful information for young people and families about finding support, understanding services and guides for young people accessing in-patient mental health services.
Mid-West Spina Bifida and Hydrocephalus Association
https://www.spinabifida.ie | info@spinabifida.ie| 061 439990
The Mid West Spina Bifida Association is a voluntary organisation providing supports and services to people with Spina Bifida and Hydrocephalus, and their families, in Limerick, Clare and North Tipperary .
Migraine Association of Ireland
https://migraine.ie | info@migraine.ie| 01 894 1280
The Migraine Association of Ireland provides support, education, information and reassurance to people suffering from migraine and other headache disorders.
Muscular Dystrophy Ireland
mdi.ie | info@mdi.ie| 01 623 6414
MDI provides support for people and their families who are living with muscular dystrophy and related neuromuscular conditions.
National Centre for Inherited Metabolic Disorders
metabolic.ie | metabolic@cuh.ie | 01 878 4317
The National Centre for Inherited Metabolic Disorders (NCIMD), also known as the Metabolic Unit, is located at Children’s University Hospital, Temple Street. It is the tertiary care referral centre for the investigation and treatment of individuals suspected of having a metabolic disorder in Ireland.
National Neonatal Transport Program
The National Neonatal Transport Program website provides information to help parents know what to expect and how to prepare when their premature or sick infant (up to 28 days old) needs to be transferred between hospitals/NICUs for intensive/specialised care.
National Rare Diseases Office
hse.ie/NRDO | rare.diseases@mater.ie| tel:01 854 5065
The National Rare Diseases Office (NRDO) provides current and reliable information about genetic and rare diseases to patients, families and health professionals.
Neonatal and NICU Care – Common terms you may hear
A guide to common terms for parents whose preterm/premature or unwell child may need care in a neonatal unit such as the Neonatal Intensive Care Unit (NICU).
Neurofibromatosis Association of Ireland
https://www.nfaireland.ie | info@nfaireland.ie| 085 702 0024
The Neurofibromatosis Association of Ireland provides information and supports for patients diagnosed with Neurofibromatosis and their families.
Omphalocele/ Exomphalos Support Group Ireland
A Facebook group where adults with Omphalocele/ Exomphalos and parents of children with Omphalocele/ Exomphalos can support each other.
Orphanet
Orphanet aims to provide high-quality information on rare diseases. The website allows you search for information on a rare disease and also provides information about expert centres, patient organisations, clinical trials and research projects related to that disease.
Oscar’s Kids Ireland
oscarskids.ie | info@oscarskids.ie
The aim of Oscar's Kids Ireland is to support families with fun and friendship through their entire cancer journey.
Pituitary Foundation of Ireland
pituitaryireland.ie/ | pituitaryireland@yahoo.ie| 086 193 2611
The Pituitary Foundation of Ireland provides support and information for pituitary patients, their families, friends and carers. They provide support to people affected by disorders of the pituitary gland such as acromegaly, cushing's, prolactinoma, diabetes insipidus and hypopituitarism.
PKU Association of Ireland
The PKU association of Ireland helps and supports those affected by Phenylketonuria (PKU), and other metabolic disorders that can be managed just like PKU.
Prader Willi Syndrome Association Ireland
pwsai.ie | info@pwsai.ie| 087 385 1387
The Prader-Willi Syndrome Association of Ireland provides supports and information for people with Prader-Willi Syndrome and their families.
Purple House Cancer Support
purplehouse.ie | info@purplehouse.ie | 01 286 6966
Purple House provides free cancer supports and activities for children, teens and adults affected by cancer and for their families.
Rare Connect (International Organisation)
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.
Rare Diseases Ireland
The Rare Diseases Ireland website has useful information about rare diseases, undiagnosed conditions, clinical trials and and how to connect with patient organisations in Ireland and abroad
Rare Ireland
rareireland.ie | rareireland@gmail.com
A charity supporting families living with a rare condition.
Receiving a life limiting diagnosis during pregnancy – Soft Ireland
View Leaflet | soft.contactme@gmail.com| 1800 213 218
SoftIreland has prepared a leaflet for parents who have received a fatal fetal or life-limiting diagnosis during pregnancy
Rett Syndrome Ireland
rettsyndrome.ie | Contact form | 087 615 2183
Rett Syndrome Ireland provides support and information to parents and families of people affected by Rett Syndrome and related disorders.
Scoliosis Awareness and Support Ireland
Scoliosis Awareness and Support Ireland Facebook | scolawaresuppire@gmail.com
Scoliosis Awareness and Support Ireland are a scoliosis support and advocacy group for families living with scoliosis and related conditions
Scoliosis Ireland- Facebook Support Group
Facebook Support Group | scoliosisirl@gmail.com
Scoliosis Ireland provides information and support for people living with Scoliosis, and their families.
SCTI – Sickle Cell and Thalassemaia Ireland
sicklecellireland.ie | info@sicklecellireland.ie| 089 420 3682
Sickle Cell and Thalassaemia Ireland (SCTI) is a charity run by Sickle Cell and Thalassaemia families, carriers and volunteers to raise awareness of and support for Sickle Cell and Thalassaemia patients and their loved ones in Ireland.
Sickle Cell Society Ireland
sicklecellsociety.ie/ | info@sicklecellsocietyireland.org
Sickle Cell Society Ireland provides patient, parent and carer support and advice and provides referrals, education and training.
SMA Ireland (Spinal Muscular Atrophy Ireland Foundation CLG)
smaireland.com | info@smaireland.com
SMA Ireland represents people and families in Ireland affected by Spinal Muscular Atrophy. It is a registered charity dedicated to raising awareness of Spinal Muscular Atrophy in Ireland and campaigning for access to treatment for all.
SoftIreland – Support Organisation for Trisomy 13/18 – (Patau’s/Edward’s Syndrome)
softireland.com | soft.contactme@gmail.com| 1800 213 218
Soft Ireland provides information and support for families with a diagnosis of Trisomy 13/18 (Patau's/Edward's Syndrome).
Spina Bifida Hydrocephalus Ireland
sbhi.ie | info@sbhi.ie| 01 457 2329
Spina Bifida Hydrocephalus Ireland provides information, support, respite and recreation for people living with spina bifida or hydrocephalus and their families.
SpinaB.ie
https://spinab.ie | Contact Us
This is the website for the Spina Bifida program and team at Temple Street Hospital.
Spinal Injuries Ireland
spinalinjuries.ie | info@spinalinjuries.ie| 01 6532180
Spinal Injuries Ireland supports people who sustain a spinal cord injury and their family and friends.
Straight Ahead Ireland
Facebook Page | info@straightaheadireland.ie
Straight Ahead is a charity affiliated to the Crumlin Medical and Research Foundation, which provides surgery, support and medical equipment for children with orthopaedic conditions such as scoliosis, hip dysplasia and limb length discrepancy.
SWAN Ireland (Syndromes Without A Name)
facebook.com/swan.ireland.77 |syndromeswithoutanameireland@gmail.com
SWAN Ireland is a new Irish support group, specifically dedicated for people who have a syndrome with no known diagnosis, and their families, living in Ireland.
The Gavin Glynn Foundation
tggf.ie | info@thegavinglynnfoundation.ie| 01 201 6030
The Gavin Glynn Foundation helps families of children battling cancer to travel overseas for treatment not available in Ireland.
Tuberous Sclerosis Complex (TSC) Ireland
tscireland.org | info@tscireland.org
TSC Ireland provides information and support to individuals with Tuberous Sclerosis Complex (TSC) Ireland and their families.
Turner Contact Group Ireland
tcgi.ie | info@tcgi.ie| 0818 887 637
Turner Contact Group Ireland provides information, resources and support for those affected by Turner Syndrome and their families
What Comes After A Diagnosis Booklet – Rare Ireland
Rare Ireland What Comes After A Diagnosis
Advice and personal stories from parents of children with a rare diagnosis
Willliams Syndrome Ireland
williamssyndrome.ie | info@williamssyndrome.ie | 087 2398055
Williams Syndrome Ireland provides support and practical help to people with Williams Syndrome and their families
SEARCH BY PATIENT AND FAMILY RESOURCE TYPE
Choose a category and/or scroll below to see the results…
- All
- Accessibility
- Accommodation and Transport
- Disability and Hidden Disability
- Financial Support and Information
- Grief and Bereavement
- Homecare, Respite, Complex Care
- Palliative and End of Life Care
- Parent/Carer Support and Information
- Patient information and supports
- Patient information and supports - children with autism or learning disability
- Recreation and Wellbeing
- Sibling Support
- Transition To Adult Healthcare
A little Lifetime Foundation
alittlelifetime.ie | info@alittlelifetime.ie| 01 8829030
A Little Lifetime provides free supports and services to parents whose baby has died around the time of birth or shortly afterwards and to parents who receive a diagnosis of fatal foetal abnormality in pregnancy
Anam Cara
anamcara.ie | info@anamcara.ie| (01) 4045378
Anam Cara is a national organisation providing information, resources along with online and face to face support services to parents after the death of their child.
Barnardos
barnardos.ie | info@barnardos.ie| (01) 453 0355
Barnardo’s Children’s Bereavement Service works with families to help them support their child through the grieving process.
Barretstown – A serious fun camp
barretstown.org | info@barretstown.org| 045 864 115
Barretstown offers free, specially designed camps and programmes for children living with serious illness, and their families. – supported behind the scenes by 24 hour on site medical and nursing care
Barretstown – Bereavement Camp
barretstown.org | info@barretstown.org| 045 864 115
The bereavement weekends at Barretstown offer the whole family a supportive environment within which they can spend quality time together, find support, share their experience of loss and find ways to look to the journey ahead
Bru Columbanus – Cork Hospitals
brucolumbanus.com | info@brucolumbanus.com | 021 434 5754
Brú Columbanus provides a ‘home from home’ accommodation for the relatives of seriously ill patients in Cork Hospitals and the Hospice, in particular to relatives of sick children. Brú Columbanus is an independent charity completely reliant on donations and fundraising initiatives to cover the running costs of the house. The accommodation is provided free of charge
BUMBLEance – Children’s Ambulance Service
bumbleance.com | booking@bumbleance.com | 086 145 1470
BUMBLEance provides safe, comfortable and fun transportation for children who require transportation between their home anywhere in Ireland and children’s hospitals for appointments or hospital admissions, hospices, regional hospitals, and respite centres nationwide.
BUMBLEance Angel Trips
bumbleance.com/about-bumbleance/angel-trips | booking@bumbleance.com | 086 145 1470
An Angel Trip is designed for a terminally ill child who is making his or her final journey on earth before he or she grows their Angel Wings
Care Alliance
carealliance.ie | info@carealliance.ie| 01 874 7776
Care Alliance provides an online support group for family carers through Ireland. They also provide return to work training and useful information for family carers.
Care Alliance – Facebook Support Group
carealliance.ie | info@carealliance.ie| 01 874 7776
The Online Family Carer Support Group offers support to nearly 4,000 carers for children and adults all over Ireland
Child friendly videos and information about hospital tests and procedures
whatwhychildreninhospital.org.uk/
This website provides lots of resources about going to hospitals, procedures and equipment. You can use the videos, information sheets and other resources to help you prepare your child and know what to expect before a procedure, appointment or hospital admission.
Children In Hospital Ireland
childreninhospital.ie/ | info@childreninhospital.ie| 01 290 3510
Children In Hospital Ireland provides play and recreation for children receiving inpatient and outpatient care in hospitals throughout Ireland.
Cian’s Kennels – Crumlin Hospital
cianskennels.ie/ | info@cianskennels.ie| 085 1488660
Cian’s Kennels bring pets closer to sick children and their families at CHI Crumlin by arranging visits from their dog during their hospital stay.
Citizens Information Bureau
citizensinformation.ie | | 0818 07 4000
Citizen’s Information Bureau provides information, advice and advocacy for people living in Ireland about topics such as health services, government supports and benefits, finances, employment and much more
Cliona’s Foundation
clionas.ie | info@clionas.ie | 061 331333
Cliona’s Foundation provides financial assistance directly to parents of children with life-limiting or chronic, complex care needs across Ireland to help with the non-medical expenses related to caring for their child.
DCA, DA & Carer’s Allowance Information Group
DCA, DA and Carer's Allowance Information group is a very active parent group with members sharing advice based on their experiences applying for a range of government supports
Disabled Drivers (and Passengers) Association of Ireland
iwa.ie | info@iwa.ie | 094 936 4054
The Disabled Drivers Association of Ireland provides supports to disabled drivers and passengers including; The EU Parking Card, Motoring Information & Advice, Advocacy, Ability Enterprises & Shopmobility.
Every Life Counts – Online Outreach for parents
everylifecounts.ie | info@everylifecounts.ie| 01 879 2382
Every Life Counts is an organisation that supports families whose babies were diagnosed with a life limiting condition before and after birth. They provide a variety of supports, information and resources to families affected by a poor diagnosis in pregnancy.
Family Carers – Young Carers – Sibling Supports
familycarers.ie | youngcarers@familycarers.ie| Freephone Careline- 1800 240724
Family Carers Ireland provides a range of support to help Siblings/Young Carers and Young Adult Carers look after themselves, these include: Individual and Family Support, Young Carer Support Groups, National Events, Free Young Carer Card, Young Carers in Education
Family Carers Ireland
familycarers.ie | careline@familycarers.ie.| Freephone Careline- 1800 240724
Family Carers Ireland provides information and supports to anyone caring for a child or adult with additional needs, physical or intellectual disabilities, those with palliative care needs or those living with chronic illnesses, mental health challenges or addiction
Feileacain The Stillbirth and Neonatal Death Association
feileacain.ie | admin@feileacain.ie | 085 2496464
Féileacáin provides support to anyone affected by the death of a baby during or soon after pregnancy.
Fidelma House – Leukaemia Unit Mercy Hospital Cork
cla.ie/fidelma-house | info@cla.ie| 021 4949801
Fidelma House is a home-from-home accommodation, close to to the Mercy University Hospital, Cork, which the Children’s Leukaemia Association can offer to families while their child is being cared for in the Children’s Leukaemia Unit.
Financial Wellbeing – Special Needs Trust Planning
financialwellbeing.ie | info@financialwellbeing.ie| 021 4823635
Financial Wellbeing advises on the many positive steps parents can take to significantly improve their child who has additional needs future financial independence.
Finding Your Way Through Grief – For Teens and Young Adults
This book was designed as a resource for young people themselves to use as they navigate their way through bereavement and loss.
First Light – Play Therapy
firstlight.ie | info@firstlight.ie| Office- 01 8732711 | National 24-Hour Helpline-1800 391 391
Play therapy is a service provided by FirstLight for children following a bereavement
First Light – Supporting Suddenly Bereaved Parents and Families
firstlight.ie | info@firstlight.ie| Office- 01 8732711 | National 24-Hour Helpline-1800 391 391
Firstlight provides support to families suddenly bereaved of a child up to 18 years.
Helium Arts
helium.ie/ | hello@helium.ie| 044 939 6960
Helium Arts is the national children’s arts and health charity. They provide free creative art workshops in community venues throughout Ireland, as well as online and in hospitals for children and young people aged 6-15 years living with lifelong physical health conditions that require ongoing medical support. Examples of conditions include diabetes, epilepsy, cystic fibrosis, allergies, heart conditions, chronic asthma, spina bifida, juvenile arthritis, rare or complex conditions and many more.
Helping your child during a procedure brochure
Helping your child during a procedure
This short document explains how you can support your child during a procedure and how to prepare at home before a procedure
Hidden Disabilities Sunflower Ireland
Hidden Disabilities Sunflower | Contact Form
The Hidden Disabilities Sunflower is a way for people with a disability or illness that might not always be obvious to others, to share that you have a hidden disability and may need extra support, understanding or more time.
Hospital Passport – Children
A resource created by Mercy Hospital Cork to help communicate your child's needs and preferences to heath-care professionals
Hospital Passport – symbols – Children
A free resource from www.widgit.com to help communicate your child's needs and preferences to healthcare professionals. Please note this resource is from a UK website.
HSE Health Passport App
HSE Health Passport - Apple Download | HSE Health Passport - Android/Samsung Download
The HSE Health Passport is now available as an App to support people with Intellectual Disability to communicate and express their unique needs when in a health care setting
Hugh’s House – Treatment at CHI at Temple Street, Rotunda, Coombes, Holles Street
hughshouse.ie | help@hughshouse.ie
Hugh's House provides free family accommodation 365 days a year for parents who have ill children in Temple Street, Holles Street, The Coombe and Rotunda Hospitals.
Invisible Disability Ireland
invisibledisabilityireland.com/ | invisibledisabilityireland@gmail.com|
Invisible Disability Ireland empowers, support, advocates and provides information, awareness and understanding of invisible and hidden disabilities.
Irish Childhood Bereavement Network
childhoodbereavement.ie | icbn@hospicefoundation.ie| 01 679 3188
ICBN provides information about supporting children, siblings and adolescents during grief and loss.
Irish Hospice Foundation
hospicefoundation.ie | info@hospicefoundation.ie | Bereavement Support Line 1800 80 70 77 | (01) 679 3188
The Irish Hospice Foundation provides end of life and bereavement supports and information.
Irish Hospice Foundation – Rosabel’s Room To Heal Fund
Rosabels Room to Heal Fund | info@hospicefoundation.ie | (01) 679 3188
Rosabel's Room to Heal Fund provides financial support to families when an infant or child aged 0-21 dies in Ireland
Irish Wheelchair Association
iwa.ie | info@iwa.ie | 01 818 6400
The Irish Wheelchair Association supports people of all ages with physical disabilities to live active, equal and independent lives.
Jacinta’s Smile – Sibling Bereavement Support
jacintassmile.ie | info@jacintassmile.ie| 087 422 0000
Jacinta’s smile provides a range of supports for children and young people who have lost a sibling
Jack and Jill The Childrens Foundation
jackandjill.ie | info@jackandjill.ie| 045 894 538
Jack and Jill provides in-home nursing care and respite support throughout Ireland for children up to the age of 6 with severe to profound neurodevelopmental delay. This may include children with brain injury, genetic diagnosis, cerebral palsy, and undiagnosed conditions. Another key part of their service is end of life care for all children up to the age of 6, irrespective of diagnosis.
LauraLynn Ireland
lauralynn.ie | info@lauralynn.ie| 01 2893151
LauraLynn provides specialist palliative and supportive care services to meet the needs of children (0-18 years old) with life-limiting conditions and their families in Ireland. LauraLynn provides care for the child while also supporting the whole family with targeted supports available to siblings, parents, grandparents and more. Care can be delivered at the hospice building in Dublin or in the family home with the Care in the Community Team providing care and supports in children’s homes across Leinster, Cork, Kerry and Limerick.
Little Blue Heroes Foundation
littleblueheroes.org | info@littleblueheroes.org | 086 171 1433
Little Blue Heroes provide supports to children with life-limiting and life threatening illnesses and their family.
Make-A-Wish Ireland
www.makeawish.ie | info@makeawish.ie| 01 2052007
Make-A-Wish Ireland aims to grant the wishes of children with life-threatening medical conditions, to bring hope, strength and happiness
Making Memories – A Guide To Making Memories
This document was created by Irish mothers and shares how they approached creating their own memory boxes
Now I Lay Me Down to Sleep Ireland
https://www.facebook.com/nilmdtsireland | nilmdtsireland@gmail.com| 083 377 4777
Now I Lay Me Down To Sleep provides free photography services for babies who will never have the opportunity to have professional photography i.e. babies who were stillborn, have died in the early days after birth, have never left the hospital, or who are sent home or to a hospice.
Pregnancy and Infant Loss Ireland
The Pregnancy and Infant Loss Ireland website is a directory of information and supports for parents bereaved parents during pregnancy or infancy.
Preparing a child with a learning disability for hospital – video
Preparing a child with a learning disability for hospital
This video shows interviews with parents of children with a learning disability. The parents share experiences and different ways they prepare their child for going to hospital, the doctor, the dentist or the optometrist. Please note this is resource is from a UK website.
Rainbows
rainbowsireland.ie | ask@rainbowsireland.ie | 01 4734175
Rainbows provides support groups for children who have experienced grief and loss due to bereavement or parental separation.
Ronald McDonald House – Treatment at CHI Crumlin Hospital
rmhc.ie | ronaldhouse@rmhc.ie | 01 456 0435
Ronald McDonald House provides low cost accommodation to families with a child undergoing treatment in Crumlin Children's Hospital.
Shamrock Squad Adventures
Shamrock Squad Facebook | shamrocksquadadventures@gmail.com
Shamrock squad are a community of special needs families on the mission to make outdoors accessible for all needs.
Sibs UK – Information Only
The Sibs website provides a range of useful information to help you support the siblings of a child with medical or additional needs – Note support services are UK only
Temple Street Sibling Camp
Telephone 01 878 4212
Temple Street Hospital holds sibling camps to help siblings understand the hospital and their siblings condition and to provide therapeutic support.
The Children’s Palliative Hub
childrenspalliativehub.com | info@aiihpc.org| 01 491 2948
The Palliative Hub provides information for parents, carers and those involved in the care of a child with a life threatening or life limiting illness and who may require palliative care need in Ireland.
Things We Wish We Knew – Parent guide to receiving a life limiting diagnosis
Information and advice created by parents who received a life limiting diagnosis for their child
Using play to prepare your child for hospital – Videos
Using play to prepare your child for hospital
These videos show play ideas to prepare younger children and young people with learning difficulties for different tests or procedures. Please note this resource is from a UK website.
Variety – The Children’s Charity of Ireland
varietyireland.org/ | info@varietyireland.org| 01 437 0323
Variety - The Children's Charity of Ireland provides specially adapted trikes and pre-loved or new educational devices to children with disabilities.
Widgit/Symbol Flashcards and Booklets – Hospital admissions, appointments and procedures
www.Widgit.com provides a section with free symbol/widget based flashcards and booklets to help prepare children with additional needs for hospital appointments, procedures or staying in hospital. Please note this resource is from a UK website.
SUBMIT A SUGGESTION, CORRECTION OR NEW RESOURCE
If you wish to submit a suggestion, correction or a new resource to our website please use the contact form below or contact informationhub@childreninhospital.ie
