CEO of @raremindscic. Psychotherapist working with rare disease communities, including those impacted by NET cancers and genetic endocrine disorders
Joined July 2020
- Tweets 70
- Following 96
- Followers 81
- Likes 112
3 Photos and videos
14 Jul 2023
Useful wider relevance on information-sharing and #coping to caregivers of children impacted by #RareDisease #skin conditions
7 Jul 2023
đĽłExcited that a 4th paper arising from my PhD
@BamfordCentre @UlsterUni,co-authored
@GerardLeavey @mmclaughlin14, is now published
@BMJ_Open. Theoretical FW & key recom forâŹď¸INFORMATION SHARING in HC settings. #RareDisease #FamilyCaregivers #Skin #Coping. bmjopen.bmj.com/content/13/7âŚ
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.
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8 Apr 2023
I love sci fi generallyđ, but anyone else excited that rare genetic conditions just got a storyline in Star Trekâs âPicardâ , with Jean-Luc and son Jack coming to terms with the emotional impact of inheritance? Ok , itâs a made up one called Irumodic Syndrome , but still..đ
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20 Jun 2022
So proud of my teams commitment to their work with clients impacted by #raredisease
20 Jun 2022
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
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21 Feb 2022
Anyone else been feeling âout of sortsâ in all the windy weather lately? Turns out an âIll wind really does blow no goodâŚ! â Brief Eerie History of How the Wind Makes Us Crazy âš Literary Hub lithub.com/a-brief-eerie-hisâŚ
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Kym Winter retweeted
1 Feb 2022
The wonderfully talented writer and artist @curtiswords created an infographic summary of my book, "Reclaiming Conversation: The Power of Talk in a Digital Age.â I have already framed it, sent it to my daughter and my editor!
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24 Nov 2021
âSuffering has become normalised in Britain. We can do better than thisâ. Agreed . theguardian.com/commentisfreâŚ
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28 Sep 2021
Had a great time talking with colleagues @DebraRegier Amy Hunter @GeneticAll_UK and @kathleen_bogart about Psychological Impact of RDâs. thanks so much to @FondationIpsen and @ScienceMagazine for raising awareness of this key area of living with #rarediseases.Do have a listen!
28 Sep 2021
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
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4 Jun 2021
Agreed . Psychotherapy is quite literally a relationship between human beings - AI âPsychotherapyâ is something else entirely
1 Jun 2021
âŠMy response to AI psychotherapy: âYouâre creating the illusion of intimacy, without the demands of a relationship. You have created a bond with something that doesnât know it is bonding with you. It doesnât understand a thing.â nytimes.com/2021/06/01/healtâŚ
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Kym Winter retweeted
1 Jun 2021
Have your say!
#30millionreasons
1 Jun 2021
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!
đ action.eurordis.org/
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Kym Winter retweeted
3 Jun 2021
đ˘ Please click to help @GeneticAll_UK, the charity that runs @rarediseaseuk win ÂŁ1,000 from @Ecclesiastical
movementforgood.com/index.phâŚ
3 Jun 2021
đ¤It only takes one click to help us win ÂŁ1,000! 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.
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4 Jun 2021
Have heard too many experiences over the years of no, poor or inadequate provision for families and individuals - especially in â atypicalâ situations such as the impact of rare conditions theguardian.com/commentisfreâŚ
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Kym Winter retweeted
12 May 2021
'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 đ ow.ly/BR5o50EJH6n
#MHAW #MentalHealthAwarenessWeek
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Kym Winter retweeted
12 May 2021
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
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Kym Winter retweeted
11 May 2021
'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 đ
ow.ly/TNFE50EJFR3
#MHAW #MentalHealthAwarenessWeek
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Kym Winter retweeted
10 May 2021
To start #MentalHealthAwarenessWeek, spend 20 minutes having a conversation about mental health with your child. Here are some conversation starters you can use.
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9 May 2021
This bookâs quote an oldie now , but a still a goodie .. The title alone means I often reach for its words of wisdom !
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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
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Kym Winter retweeted
28 Feb 2021
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.
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Kym Winter retweeted
4 Feb 2021
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
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Kym Winter retweeted
25 Jan 2021
Thereâs a superstition in oncology that the worst things happen to the nicest patients
In truth I think it reflects even our misplaced sensibility that virtue should confer good health
But it doesnât, and in fact our fleeting lives are all the more reason to be considerate
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