Translate the text from Welsh to English.



 
Cafodd ap Care a Respond ei ddatblygu yng Nghymru gyda chyllid gan Lywodraeth Cymru i gefnogi’r broses o wneud penderfyniadau clinigol mewn argyfwng a sefyllfaoedd eraill lle mae amser yn dyngedfennol.  

  

Y gobaith yw y bydd hefyd yn helpu i gydlynu gofal ar gyfer y rhai hynny y mae clefydau prin yn effeithio arnynt, fel teulu Swan o Gaerffili.  

  

Mae gan y ferch, Lucy, Syndrom Snijders Blok Fisher, sef anhwylder niwroddatblygiadol sy’n golygu ei bod yn dioddef gyda hypotonia a phroblemau prosesu synhwyraidd, ymhlith pethau eraill.  

  

Am flynyddoedd nid oedd enw ar gyfer y syndrom a oedd yn effeithio arni, gan eu gadael yn teimlo’n ynysig ac unig.  

  

Dywedodd mam Lucy, Claire:



> Nid oes llawer iawn o ymwybyddiaeth o gyflyrau genetig prin a heb ddiagnosis. Byddai wedi helpu fy nheulu i, a llawer o deuluoedd cyn ac ar ôl ein profiad ni, pe tai mwy o ddealltwriaeth. Rwyf hefyd yn sicr y byddai hyn yn hwyluso’r broses ar gyfer teuluoedd gan alluogi diagnosis i gael ei wneud yn gynt.  
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> Ar ôl brwydro am gyfnod hir hir iawn, cawsom ddiagnosis o’r diwedd ar gyfer cyflwr genetig arbennig o brin ein merch. Mae hyn yn rhywbeth nad yw rhai teuluoedd byth yn ei gael. Ni allwn beidio â chrio.


Mae Llywodraeth Cymru hefyd yn goleuo adeilad Parc Cathays ar Ddiwrnod Clefydau Prin eleni i godi ymwybyddiaeth o’r digwyddiad a’i waith i wella bywydau'r rhai hynny sy’n byw â chyflyrau prin.  

  

Dywedodd Eluned Morgan, y Gweinidog Iechyd a Gwasanaethau Cymdeithasol:



> Gall cleifion clefydau prin a’u teuluoedd wynebu oes gyfan o ofal cymhleth. Gall byw gyda chlefyd prin hefyd gael effaith enfawr ar addysg, sefydlogrwydd ariannol, symudedd, ac iechyd meddwl.  
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> Mae’n hanfodol ein bod yn cynnwys llais cleifion clefydau prin wrth ddatblygu polisi iechyd a gofal cymdeithasol ehangach.  
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> Rwyf wrth fy modd bod ap Care a Respond yn cael ei ddatblygu ac rwy’n hyderus y bydd yn hwyluso cyfathrebu a dealltwriaeth am gyflyrau ar gyfer defnyddwyr a gweithwyr iechyd proffesiynol.  
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> Cafodd ein Strategaeth Arloesi, Arloesi Cymru, ei lansio ddoe ac mae’r ap hwn yn enghraifft wych o’r hyn y gellir ei gyflawni drwy’r strategaeth hon a gweithio ar y cyd.


Mae Llywodraeth Cymru wrthi’n rhoi Cynllun Gweithredu Cymru ar gyfer Clefydau Prin ar waith, ac yn cyllido Clinig Syndrom heb Enw (SWAN) cyntaf y DU yn Ysbyty Athrofaol Cymru, yng Nghaerdydd.  

  

Ychwanegodd y Gweinidog:



> Mae’r clinig SWAN yn rhoi gobaith a sicrwydd i deuluoedd, gan gynnig ‘siop un stop’ gyda mynediad at arbenigwyr ac ymchwiliadau arloesol. Mae hwn yn gam enfawr tuag at leihau’r amser y mae pobl yn byw â chlefyd heb ddiagnosis.  
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> Ni hefyd yw gwlad gyntaf y DU i gynnig profion genomau genetig i blant sâl iawn a’r wlad gyntaf i benodi arweinydd clinigol cenedlaethol a rheolwr rhaglen y GIG i gefnogi’r gwaith o roi ein Cynllun Gweithredu ar gyfer Clefydau Prin ar waith.







Translation:


 
The Care and Respond app has been developed in Wales with Welsh Government funding to support clinical decision making in cases of emergency and other time critical situations.  

  

It is hoped it will also improve coordination of care for those affected by rare diseases, like the Swan family from Caerphilly.  

  

Their daughter, Lucy, has Snijders Blok Fisher Syndrome, a neurodevelopmental disorder which sees her suffer with hypotonia and sensory processing issues among other things.  

  

For years they had no name for the syndrome affecting her, which left them feeling isolated and alone.  

  

Lucy’s mum Claire said:



> The awareness around undiagnosed and rare genetic conditions is very minimal. It would have helped my family and many families before and after mine if the understanding was increased. I am also sure this would aid a smoother process for families and enable faster diagnosis.  
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> After fighting for what felt like forever we finally had a diagnosis for our daughter’s ultra\-rare genetic condition. This is something some families never achieve. I couldn’t help but cry.


The Welsh Government is also lighting up its Cathays Park building this Rare Disease Day to raise awareness of the event and its work to improve the lives of those living with rare conditions.  

  

Health and Social Services Minister Eluned Morgan said:



> Rare disease patients and their families can face a lifetime of complex care. Living with a rare disease can also have a huge impact on education, financial stability, mobility, and mental health.  
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> It is vital we include the voice of rare disease patients when developing wider health and social care policy.  
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> I am delighted the Care and Respond app is being developed and I am confident it will streamline communication and understanding around conditions for both users and health professionals.  
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> Our new Innovation Strategy, Wales Innovates launched yesterday and this is a fantastic example of what can be achieved through this strategy and collaborative working.


The Welsh Government is currently implementing the Wales Rare Diseases Action Plan, and funding the UK’s first SWAN (Syndrome Without a Name) Clinic, based at the University Hospital of Wales, in Cardiff.  

  

The Minister for Health and Social Services, Eluned Morgan, added:



> The SWAN clinic brings hope and reassurance to families, offering a ‘one stop shop’ with access to specialists and cutting\-edge investigations. This is a huge step to shortening the time people are living with an undiagnosed disease.  
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> We are also the first UK nation to offer genome genetic testing to very ill children and the first nation to appoint a national clinical lead and an NHS programme manager to support the implementation of our Rare Diseases Action Plan.