RESOURCES
Other Useful Links
Unique
Unique is UK based charity offering operating on an international scale to help inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.
Unique, The Rare Chromosome Disorder Support Group, G1 The Stables, Station Road West, Oxted, Surrey, RH8 9EE, UK
Web: www.rarechromo.org
Informing Families
The national research of the Informing Families Project revealed that over 60% of families did not receive written information when they were informed of their child’s disability.
Receiving difficult news can lead to a reaction of shock, and this can make it difficult to absorb information as it is being said. It is therefore very important that parents are given good quality written information that they can take home and absorb at their own pace.
This website was developed by the Informing Families Project to provide a source of good quality, appropriate, accurate and up to date information to parents at the time of diagnosis.
The Global Gene Project
The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations.
The website has a number of resources including links to to other organisations, toolkits, facts about rare diseases and links to documentaries.
KidsHealth
KidsHealth also provides families with perspective, advice, and comfort about a wide range of physical, emotional, and behavioral issues that affect children and teens.
Together for short lives
Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. We support families, professionals and services, including children’s hospices.
International Children Palliative Care Network (ICPCN)
The International Children’s Palliative Care Network (ICPCN) is a worldwide network of individuals and agencies working with children and young people with life-limiting and life-threatening conditions. We actively work to improve the lives of the estimated 20 million children with life-limiting conditions worldwide through communication, advocacy, research, education and strategic development of services.
Moonshine Movies
Series of short films focusing on children and their families with palliative care needs
Stillbirth and Neonatal Death Association of Ireland – SANDAI
Féileacáin (Stillbirth and Neonatal Death Association of Ireland – SANDAI) is a newly formed, not for profit organisation that aims to offer support to anyone affected by the death of a baby during pregnancy or shortly after.
Website: https://feileacain.ie/
FirstLight
FirstLight offers support and information, and promotes research into the sudden, unexpected, often unexplained deaths of infants and young children.
Website: https://firstlight.ie/
Now I Lay Me Down to Sleep (nilmdts)
Mission: To introduce remembrance photography to parents suffering the loss of a baby with a free gift of professional portraiture.
Website: https://www.nowilaymedowntosleep.org
Jointly
App for mobile phones, tablets and computers, which aims to help families manage care for loved ones
Website: https://www.jointlyapp.com
matter.carers.org
A new website and online community specifically designed for unpaid young adult carers aged between 16 and 25 aims to help counter the isolation of caring
Website: https://matter.carers.org
