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

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.

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

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.

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.

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.

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.

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.

| 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.

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

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.

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.

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.

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.

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).

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.

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

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

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

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.

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).

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

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.

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.

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.

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.

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

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