Kym Winter

CEO of @raremindscic. Psychotherapist working with rare disease communities, including those impacted by NET cancers and genetic endocrine disorders

[Kym Winter @KymFWinter]

Useful wider relevance on information-sharing and #coping to caregivers of children impacted by #RareDisease #skin conditions

[Dr Carleen Walsh @CARLEENWALGAL]

🥳Excited that a 4th paper arising from my PhD
@BamfordCentre @UlsterUni,co-authored
@GerardLeavey @mmclaughlin14, is now published
@BMJ_Open. Theoretical FW & key recom for⬆️INFORMATION SHARING in HC settings. #RareDisease #FamilyCaregivers #Skin #Coping. https://t.co/Bz5H5TYiPc

[Kym Winter @KymFWinter]

@BartolomeuPires @HDA_tweeting Very sadly this is some thing we hear all too often @RaremindsUK in relation to mental health support for those with rare conditions. Great campaign @HDA. Change is needed.

[Kym Winter @KymFWinter]

I love sci fi generally😊, but anyone else excited that rare genetic conditions just got a storyline in Star Trek’s ‘Picard’ , with Jean-Luc and son Jack coming to terms with the emotional impact of inheritance? Ok , it’s a made up one called Irumodic Syndrome , but still..😁

[Kym Winter @KymFWinter]

So proud of my teams commitment to their work with clients impacted by #raredisease

[Rareminds @RaremindsUK]

We believe in the importance of a counsellor who understands the emotional impact of #raredisease both generically and in ways that are specific to your condition. Our 1st year feedback shows that 100% of those who attended our Counselling Service would recommend their counsellor

[Kym Winter @KymFWinter]

Anyone else been feeling ‘out of sorts’ in all the windy weather lately? Turns out an ‘Ill wind really does blow no good…! ‘ Brief Eerie History of How the Wind Makes Us Crazy ‹ Literary Hub https://t.co/hv6ySb6FXx

[Sherry Turkle @STurkle]

The wonderfully talented writer and artist @curtiswords created an infographic summary of my book, "Reclaiming Conversation: The Power of Talk in a Digital Age.” I have already framed it, sent it to my daughter and my editor!

[Kym Winter @KymFWinter]

‘Suffering has become normalised in Britain. We can do better than this’. Agreed . https://t.co/gVcLjI08cV

[Kym Winter @KymFWinter]

Had a great time talking with colleagues @DebraRegier Amy Hunter @GeneticAll_UK and @kathleen_bogart about Psychological Impact of RD’s. thanks so much to @FondationIpsen and @ScienceMagazine for raising awareness of this key area of living with #rarediseases.Do have a listen!

[Rareminds @RaremindsUK]

Sign up to hear our Founder/Clinical Director @KymFWinter in lively conversation with @regierdebra @GeneticAll_UK and @kathleen_bogart on the Psychological Impact of RareDiseases , thanks to @FondationIpsen and @ScienceMagazine #raredisease #healthcare #mentalhealth

[Kym Winter @KymFWinter]

Agreed . Psychotherapy is quite literally a relationship between human beings - AI ‘Psychotherapy’ is something else entirely

[Sherry Turkle @STurkle]

⁩My response to AI psychotherapy: “You’re creating the illusion of intimacy, without the demands of a relationship. You have created a bond with something that doesn’t know it is bonding with you. It doesn’t understand a thing.” https://t.co/OXRFFzDYg7

[Rare Disease UK @rarediseaseuk]

Have your say!
#30millionreasons

[Rare Disease UK @rarediseaseuk]

📢 Please click to help @GeneticAll_UK, the charity that runs @rarediseaseuk win £1,000 from @Ecclesiastical
https://t.co/4nuayYfAIt

[Kym Winter @KymFWinter]

Have heard too many experiences over the years of no, poor or inadequate provision for families and individuals - especially in ‘ atypical’ situations such as the impact of rare conditions https://t.co/YkRuC1P5xz

[Rare Disease UK @rarediseaseuk]

'Coordinated rare disease services should include assessment of mental health needs and access to mental health services. This should be extended to carers.' Read more in our report here 👉 https://t.co/Pat4XMpTOv
#MHAW #MentalHealthAwarenessWeek

[UKCP @UKCP_Updates]

Evidence has continued to confirm the widespread impact COVID-19 is having on mental health.

Increasing access to psychotherapy through a choice of talking therapies in the NHS is vital to addressing this increasing need: https://t.co/n7rA3zplQB #Covid19 #Psychotherapy

[Rare Disease UK @rarediseaseuk]

'Healthcare professionals should be provided with the skills, knowledge and capacity to demonstrate awareness of the emotional challenges of living with a rare disease.' Read our other recommendations 👇
https://t.co/EpvWDtqXxQ
#MHAW #MentalHealthAwarenessWeek

[YoungMinds @YoungMindsUK]

To start #MentalHealthAwarenessWeek, spend 20 minutes having a conversation about mental health with your child. Here are some conversation starters you can use.

[Kym Winter @KymFWinter]

This book’s quote an oldie now , but a still a goodie .. The title alone means I often reach for its words of wisdom !

[Neuroendocrine Cancer UK #NotJustNECancer @ncukcharity]

Excellent clinical trials design discussion: we must address impact on QofL (Quality of Life) alongside survival - including design to avoid financial, not just physical, toxicity - what matters to patients Simron Singh / John Ramage #ENETs2021 @NeuroEndoTalk

[Rareminds @RaremindsUK]

It's Rare Disease Day! After the past year, this Rare Disease Day feels more important than ever before. So if you have a rare disease, or support the rare disease community in any way, today is for you.

[Rareminds @RaremindsUK]

On this @WorldCancerDay we'd like to celebrate all the small (yet mighty!) organisations who work tirelessly to support those with rare and uncommon cancers. We are honoured to work with you!
@ncukcharity
@AmendInfo
@Cancer52org
#WorldCancerDay