Order Free Book Here

Always in My Heart” is a book for 9-12 year olds who are experiencing grief

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

Children's Hospital Passport

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.

Download Resource Packs

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.

tscireland.org | info@tscireland.org

TSC Ireland provides information and support to individuals with Tuberous Sclerosis Complex (TSC) Ireland and their families.

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.

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.

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.

asthma.ie | reception@asthmasociety.ie | 01 817 8886

The Asthma Society of Ireland provides support and information for people with asthma and their families

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

lpi.ie | info@lpi.ie

Little People of Ireland (LPI) is the national charity in Ireland for people with dwarfism related conditions, providing information and support.

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.

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.

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.

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

Children's Hospital Passport

A resource created by Mercy Hospital Cork to help communicate your child's needs and preferences to heath-care professionals

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.

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.

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.

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.

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.

https://spinab.ie | Contact Us

This is the website for the Spina Bifida program and team at Temple Street Hospital.

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 .

sicklecellsociety.ie/ | info@sicklecellsocietyireland.org

Sickle Cell Society Ireland provides patient, parent and carer support and advice and provides referrals, education and training.

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.

https://www.lhm.org.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

Marfan Ireland Facebook | info@marfan.ie|

Marfan Syndrome Support Group provides information and support for people living with Marfan Syndrome and their families.

lmcsupport.ie | lmcbereavement@gmail.com

LMC offers non-directive peer support and practical advice for parents who are facing a poor fetal diagnosis and are considering their options.

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.

orpha.net/

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.

dystonia.ie | info@dystonia.ie| 01 492 2514

Dystonia Ireland provides information and support to people living with Dystonia and their families.

arc-uk.org/for-parents

The ARC website provides information for families who have received a diagnosis during pregnancy - Please note this is a UK website and information and services discussed may not apply to 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.

invisibledisabilityireland.com/ | invisibledisabilityireland@gmail.com|

Invisible Disability Ireland empowers, support, advocates and provides information, awareness and understanding of invisible and hidden disabilities.

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.

Facebook Support 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

| 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.

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.

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.

crohnscolitis.ie/ | info@crohnscolitis.ie| tel: 01 531 2983

Crohn's & Colitis Ireland provides information, advice and support to people living with Crohn's Disease or Ulcerative Colitis (IBD), and their families.

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.

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.

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.

chfed.org.uk/about-us/ |

Children's Heart Foundation UK provides excellent information and webinars for families whose child has a heart condition. – Note support services are UK only

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.

rareconnect.org/en/ |

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.

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.

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

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.

nntp.ie

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.

sibs.org.uk |

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

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.

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.

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

familycarers.ie/learning-education | 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

ahead.ie/ | ahead@ahead.ie| 01 592 1467

Ahead provides information and advice for young people with disabilities or long term illness, and parents, about accessing further education and employment.

DARE is a third level alternative admissions scheme for school-leavers whose disabilities or long-term illness have had a negative impact on their second level education.

familycarers.ie/emergency-care-scheme | careline@familycarers.ie.| Freephone Careline- 1800 240724

Joining the Emergency Scheme will ensure that the person you care for will continue to receive the support they need during a time of crisis such as illness or injury to the parent/carer

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

A useful list to help you to to understand the main services and entitlements for people with disabilities or long term illness.

A useful checklist to help you to check out all the main services and entitlements for carers

A Summary of entitlements available for children and adults with disabilities or long term illness

The Rights & Entitlements guide outlines the main government supports and services available to parents/family carers

Living Well Program | helenodriscollqol@outlook.ie| 087 3964 307

Building Better Carers program is for those caring for a child, teenager, young adult, a parent, family member, a loved one or friend. Classes help build the participants’ confidence in their ability to manage their caregiving tasks and maintain a fulfilling life.

familycarers.ie/working-care-out | careline@familycarers.ie.| Freephone Careline- 1800 240724

FCI offers a range of supports to current and former carers to address your questions and worries about returning to work or study.

Facebook Support Group | scoliosisirl@gmail.com

Scoliosis Ireland provides information and support for people living with Scoliosis, and their families.

Facebook Support Group

A Facebook group where adults with Omphalocele/ Exomphalos and parents of children with Omphalocele/ Exomphalos can support each other.

Facebook Support Group | irishprematurebabies@gmail.com

The Irish Premature Babies group advocates on behalf of premature babies and provides support to their families. They run a private Facebook group to support families

Twitter Support Group | Facebook Support Group

DCA Warriors have Twitter and Facebook support groups which provide support, information and promote equality and inclusion as well as raising awareness in the community by being a voice for their members.

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.

SteppingUp provides advice, personal stories and useful checklists to help young people and parents prepare to transition to adult healthcare services

patientadvocacyservice.ie| Contact Form | 0818 293003

Patient Advocacy Services provide independent, confidential support to help make a formal complaint against a public hospital in Ireland. This includes complaints about CHI children's hospitals, regional/general hospitals, maternity hospitals and specialist hospitals and covers inpatient, outpatient/diagnostic and emergency care.

nhivrc.ie | cochlearimplant@beaumont.ie | 01 809 2191

cleftcareireland.ie

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.

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).

Things We Wished We Knew

Information and advice created by parents who received a life limiting diagnosis for their child

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.

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.

chronicpain.ie | info@chronicpain.ie | 01 804 7567

Chronic Pain Ireland is the national organisation providing information and support services to people living with Chronic Pain and their families.

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.

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.

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.

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.

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.

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.

erbspalsy.ie | info@erbspalsy.ie| 087 761 0098

Erb's Palsy Ireland provides information and support for families and sufferers of Erb's Palsy.

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.

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

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.

sibs.org.uk |

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

spinalinjuries.ie | info@spinalinjuries.ie| 01 6532180

Spinal Injuries Ireland supports people who sustain a spinal cord injury and their family and friends.

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.

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.

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.

arthritisireland.ie | Contact Form | 01 661 8188

Arthritis Ireland works to support people with arthritis and their families. Some types of arthritis included in the website include: ankylosing spondylitis, axial spondyloarthritis, down syndrome associated arthritis, fibromyalgia, juvenile idiopathic arthritis, lupus, Raynaud's, scleroderma and more.>

Making Memories

This document was created by Irish mothers and shares how they approached creating their own memory boxes

info@barretstown.org| 045 864 115
Barretstown provides a 7 day camp in mid-summer for siblings of children that have a serious illness. More information can be found here

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.

nmhnicu.ie/

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).

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

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.

williamssyndrome.ie | info@williamssyndrome.ie | 087 2398055

Williams Syndrome Ireland provides support and practical help to people with Williams Syndrome and their families

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.

fragilexireland.org | Contact form

The Irish Fragile X Society provides support and information for families caring for individuals with Fragile X.

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

informingfamilies.ie | info@informingfamilies.ie| (091) 792316

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.

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.

braintumourireland.com | info@braintumourireland.com| 085 721 9000

Brain Tumour Ireland provides information and support for people affected a brain tumour and their family.

angelman.ie | admin@angelman.ie

Angelman Syndrome Ireland provides information and supports for families and caregivers throughout Ireland offering practical and emotional support. p>

cldi.ie |Contact form

Children’s Liver Disease Ireland connects families affected by liver disease and shares useful information to help those who are on the same path.

childrensgriefcentre.ie | info@childrensgriefcentre.ie| 061 224 627/a>

Children’s Grief Centre provides a professional, safe, accepting and compassionate listening service to help your child work through his or her feelings.

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

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.

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.

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.

pku.ie | info@pku.ie

The PKU association of Ireland helps and supports those affected by Phenylketonuria (PKU), and other metabolic disorders that can be managed just like PKU.

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.

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.

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.

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

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

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.

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.

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.

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

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.

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.

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.

cfireland.ie | info@cfireland.ie| 1800 832 022

CF Ireland provides information, supports and grants for people living with Cystic Fibrosis and their families.

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.

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.

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.

debraireland.org | info@debraireland.org | 01 4126924

DEBRA Ireland provides support services to patients and families living with epidermolysis bullosa (EB).

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.

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.

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.

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.

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.

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.

A guide to help parents support the siblings of a child diagnosed with cancer, and to understand how they might be feeling.

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.

Rare Ireland What Comes After A Diagnosis

Advice and personal stories from parents of children with a rare diagnosis

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.

rdi.ie/ | advocacy@rdi.ie

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

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.

rareireland.ie | rareireland@gmail.com

A charity supporting families living with a rare condition.

nmhnicu.ie

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).

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

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.

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.

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

feileacain.ie | admin@feileacain.ie | 085 2496464

Féileacáin provides support to anyone affected by the death of a baby during or soon after pregnancy.

pregnancyandinfantloss.ie 

The Pregnancy and Infant Loss Ireland website is a directory of information and supports for parents bereaved parents during pregnancy or infancy.

togetherforshortlives.org.uk

Together For Short Lives is a UK charity. It provides excellent information to support anyone who is caring for, or has cared for, a child with a life-limiting or life-threatening condition- Please note support services are available in UK only.

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

alittlelifetime.ie | info@alittlelifetime.ie| 01 882 9030

A Little Lifetime provides a Facebook support group for parents who have received a fatal foetal diagnosis and have been told their baby will die in utero or shortly afterwards.

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.

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.

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.

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

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

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.

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

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.

Order Free Book Here
Online Book

This book was designed as a resource for young people themselves to use as they navigate their way through bereavement and loss.

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

childhoodbereavement.ie |  icbn@hospicefoundation.ie| 01 679 3188

ICBN provides information about supporting children, siblings and adolescents during grief and loss.

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.

Additional Needs Payment

This is a means tested payment payment to help you with an expense that you cannot pay from your weekly income. It can be used to assist with funeral expenses. 

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