CEO of @raremindscic. Psychotherapist working with rare disease communities, including those impacted by NET cancers and genetic endocrine disorders
London UK
Joined July 2020
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Useful wider relevance on information-sharing and #coping to caregivers of children impacted by #RareDisease #skin conditions
🥳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. bmjopen.bmj.com/content/13/7…
ALT Research made possible by @ISG_Charity @FIRST_Skin, the international expert group & all the caregivers who participated from across 10 countries & 5 continents #ichthyosis. Thank you to all involved.
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..😁
So proud of my teams commitment to their work with clients impacted by #raredisease
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
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 lithub.com/a-brief-eerie-his…
Kym Winter retweeted
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!
‘Suffering has become normalised in Britain. We can do better than this’. Agreed . theguardian.com/commentisfre…
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!
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
Agreed . Psychotherapy is quite literally a relationship between human beings - AI ‘Psychotherapy’ is something else entirely
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.” nytimes.com/2021/06/01/healt…
Kym Winter retweeted
Have your say!
#30millionreasons
Today we are launching the campaign #30millionreasons for European action on rare diseases!
Share your reasons for renewed European action on rare diseases to truly improve the lives of the 30 million people living with a rare disease across Europe!
👉 action.eurordis.org/
Kym Winter retweeted
📢 Please click to help @GeneticAll_UK, the charity that runs @rarediseaseuk win £1,000 from @Ecclesiastical
movementforgood.com/index.ph…
🤞It only takes one click to help us win £1,000! ow.ly/VGNg50F1PNh Please click to help us support people affected by genetic, rare and undiagnosed conditions. This is an amazing opportunity for us from @Ecclesiastical as part of their #MovementForGood.
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 theguardian.com/commentisfre…
Kym Winter retweeted
'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 👉 ow.ly/BR5o50EJH6n
#MHAW #MentalHealthAwarenessWeek
Kym Winter retweeted
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: ow.ly/CKaW50EKJsS #Covid19 #Psychotherapy
Kym Winter retweeted
'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 👇
ow.ly/TNFE50EJFR3
#MHAW #MentalHealthAwarenessWeek
Kym Winter retweeted
To start #MentalHealthAwarenessWeek, spend 20 minutes having a conversation about mental health with your child. Here are some conversation starters you can use.
This book’s quote an oldie now , but a still a goodie .. The title alone means I often reach for its words of wisdom !
Kym Winter retweeted
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
Kym Winter retweeted
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
