Contact & NNPCF National Parent Carer Forums Conference recordings Contact & NNPCF National Parent Carer Forums Conference recordings 2023-24 Contact & NNPCF joint face-to-face Conference recordings We are really pleased to be able to share recordings of sessions from...
DLA and Admin Support Assistant DLA and Admin Support Assistant Contract: Fixed term contract until 31st March 2024 Salary: Full time salary £ 26,793 – £28,203 (£7,655 – £8,058 pro rated) Hours: 10 hours per...
Paroxysmal Extreme Pain disorder Also known as: Familial Rectal Pain Background Paroxysmal extreme pain disorder is a rare disorder of abnormal pain sensation which presents in the first year of life with episodes of severe...
CHARGE syndrome Background CHARGE association was initially described in 1979, with the acronym CHARGE first used in 1982. With identification of the gene responsible for CHARGE in 2004, it was renamed CHARGE...
Refused childcare in England? This advice is for families in England only. There are laws around childcare that local authorities and childcare providers must follow. The main law in England is the Childcare Act...
The Scottish Child Payment – episode transcript Hi. My name is Derek and I’m an adviser on Contact’s free Helpline for families with disabled children. This podcast is about the Scottish Child Payment a benefit for low...
Albinism Also known as: Hypopigmentation; Ocular Albinism; Oculo-cutaneous Albinism Background Albinism is a group of genetic disorders in which the affected individual has reduced or absent pigmentation (colouring to skin, hair and...
Epilepsy syndromes in Childhood Background The epilepsies are a group of conditions in which people are prone to have attacks (epileptic seizures or fits). A seizure is caused by a burst of excess electrical...
Townes-Brocks syndrome Background Townes-Brocks syndrome (TBS) is a rare genetic condition present at birth. The main features include ear anomalies leading to hearing loss and characteristic anal and thumb anomalies. The range...
Leber’s Hereditary Optic Neuropathy Also known as: Leber’s Optic Atrophy; Leber’s Optic Neuropathy Overview Leber’s Hereditary Optic Neuropathy (LHON) is a rare genetic condition that causes loss of central vision. The optic nerve, the...
Opitz G/BBB syndrome Also known as: G syndrome; Hypertelorism-Hypospadias syndrome; Opitz-Frias syndrome Background Professor John Opitz, an eminent North American geneticist, and colleagues first drew attention to these conditions in 1969 and subsequently....
Anophthalmia Also known as: Anophthalmos Background Anophthalmia is a rare congenital (present at birth) abnormality in which a baby has no eye in the socket. If the eye is small, this...
VACTERL Association Background ‘VACTERL’ is the name for a group of developmental defects that often occur as a group (or ‘association’) in newborn babies. Credits Medical text written December 2005 by Mr...
Contact appoints new Chair of Trustees Contact is delighted to announce the appointment of our new Chair of Trustees, Vanessa Longley. Vanessa, an experienced leader in the not-for-profit sector, will replace our outgoing Interim Chair Angela...
Taking care of yourself The information on this page has been written by parents who have been bereaved and reproduced by kind permission of The Child Death Helpline. How you might feel Most people...
Case study: Pears Foundation Pears Foundation support and investment enables us to provide the families of disabled children with vital emotional and practical support. Whatever their child’s condition, whenever they need us, wherever they...
Face-to-face fundraising We use face-to-face fundraisers as a great way to raise awareness of our work in the community. You may have talked to one of our fundraisers at your door, on the...
DinoDay Why we need your help The DinoDay Challenge is our annual fundraising event, helping us raise funds so we can continue to change the lives of families with disabled children....