SWAN UK CYMRU LAUNCH

Families in Wales affected by undiagnosed and rare conditions to be better supported thanks to a three year project funded by the National Lottery Community Fund in Wales.

About SWAN UK

SWAN stands for ‘syndromes without a name’. It is not a diagnosis, but a term used to describe a genetic condition so rare it is often impossible to diagnose.

SWAN UK (syndromes without a name) is a support network run by Genetic Alliance UK. It is the only dedicated support in the UK for families of children affected by a syndrome without a name. We enable families to make contact with others who understand the unique challenges of raising a child affected by an undiagnosed genetic condition, offer access to information and support through our online forums and our Local Networks, run regular free events to bring families together and provide opportunities to make precious memories.

It is currently estimated that each year in Wales around 300 children are born with a syndrome without a name. These children often have a mix of learning and physical disabilities and many have significant health needs.

Consultations with existing SWAN UK parents and families based in Wales in 2019 highlighted the desperate need for more specialised support for those who face the unique demands of raising a child without a diagnosis in Wales.

Some of the challenges raised by families included poor coordination of care, few opportunities to connect and meet with other families in a similar situation and how lack of  diagnosis means that there are no obvious parent/carer support groups to turn to for help.

As well as these issues, families in Wales often face the additional challenge of being dispersed across largely rural communities. The rurality of the Welsh landscape often makes travel to and from appointments expensive, lengthy and means that there are much fewer local specialist services available.

SWAN UK – CYMRU AIMS TO:

• Identify and engage more Welsh families into the existing SWAN UK – Cymru peer support network so that they feel less isolated.
• Deliver bilingual information, support, activities and events specifically tailored to the needs identified by Welsh families.
• Network with local services and organisations to help educate local professionals on the needs and challenges faced by SWAN UK families in Wales and the vital importance of effective care coordination.
• Develop and produce a bilingual early intervention toolkit – Rare Resources Wales – which will provide a wide range of general information on genetic, rare and undiagnosed conditions as well as advice on how to access reliable information, care and support in Wales.

‘I was so glad to find SWAN UK! Suddenly we no longer felt alone. I couldn’t believe how many other families were going through the same thing as us’ Tammy from Bargoed near Caerphilly.

For more information please email cymru@undiagnosed.org.uk

Rhoi cymorth gwell i deuluoedd yng Nghymru y mae cyflyrau heb ddiagnosis a phrin yn effeithio arnynt, gyda phrosiect tair blynedd wedi’i ariannu gan Gronfa Gymunedol y Loteri Genedlaethol yng Nghymru.

Gwybodaeth am SWAN UK

SWAN yw ‘syndromes without a name’. Nid diagnosis mohono, ond term a ddefnyddir i ddisgrifio cyflwr genetig sydd mor brin nad oes modd gwneud diagnosis ohono’n aml.

Rhwydwaith cymorth yw SWAN UK (syndromau heb enw) sydd yn cael ei redeg gan Genetic Alliance UK. Dyma’r unig gymorth yn y DU sydd yn arbennig ar gyfer teuluoedd plant sydd â syndrom heb enw. Rydym yn galluogi teuluoedd i ddod i gysylltiad ag eraill sydd yn deall heriau unigryw magu plentyn sydd â chyflwr genetig heb ddiagnosis. Mae ein fforymau ar-lein a’n Rhwydweithiau Lleol yn rhoi modd i gael gafael ar wybodaeth a chymorth, ac rydym yn cynnal digwyddiadau am ddim yn gyson i ddod â theuluoedd ynghyd a rhoi cyfleoedd i greu atgofion gwerthfawr.

Gyda grant Cronfa Gymunedol y Loteri Genedlaethol yng Nghymru, mae SWAN UK a Genetic Alliance UK bellach yn gallu datblygu eu model cymorth sydd eisoes yn llwyddiannus ar draws Cymru.

GWYBODAETH AM SWAN UK – CYMRU

Ar hyn o bryd, amcangyfrifir bod 300 o blant yn cael eu geni â syndrom heb enw yng Nghymru pob blwyddyn. Yn aml, bydd gan y plant hyn gymysgedd o anableddau dysgu a chorfforol a bydd gan lawer anghenion iechyd sylweddol.

Wrth ymgynghori â rhieni a theuluoedd SWAN UK yng Nghymru yn 2019, gwelwyd bod angen enbyd am fwy o gymorth arbenigol i’r rheiny sydd yn magu plentyn heb ddiagnosis dan amgylchiadau unigryw yng Nghymru.

Yn ogystal â’r problemau hyn, mae’r ffaith bod teuluoedd Cymru wedi’u gwasgaru ar hyd cymunedau gwledig gan mwyaf, yn ychwanegu at yr her. Mae natur wledig tirwedd Cymru yn golygu bod teithio yn ôl ac ymlaen rhwng apwyntiadau yn ddrud, yn cymryd cryn amser, ac yn golygu bod llai o wasanaethau arbenigol ar gael yn lleol.

BWRIAD SWAN UK – CYMRU YW:

• Adnabod a denu rhagor o deuluoedd yng Nghymru at rwydwaith cymorth SWAN UK – Cymru fel nad ydynt yn teimlo mor unig.
• Darparu gwybodaeth, cymorth, gweithgareddau a digwyddiadau yn ddwyieithog sydd yn arbennig i anghenion teuluoedd Cymru.
• Rhwydweithio â gwasanaethau a sefydliadau lleol i helpu addysgu gweithwyr proffesiynol lleol am anghenion a’r heriau i deuluoedd SWAN UK yng Nghymru, a phwysigrwydd cydlynu gofal yn effeithiol.
• Datblygu a chynhyrchu pecyn cymorth dwyieithog ar ymyrraeth gynnar – Adnoddau Prin Cymru – a fydd yn darparu ystod eang o wybodaeth ar sut i gael gwybodaeth, gofal a chymorth sydd yn ddibynadwy yng Nghymru.

‘Roeddwn i mor falch dod ar draws SWAN UK! Nid oeddem ni’n teimlo ar ein pen ein hunain wedyn. Doeddwn i methu credu faint o deuluoedd eraill oedd yn mynd drwy’r un peth â ni.’ Tammy o Fargoed ger Caerffili.

Am fwy o wybodaeth, anfonwch e-bost at cymru@undiagnosed.org.uk