Rareminds

"And for us as well, at the moment we're at an age where a lot of our friends are also trying and we're the only ones of our friends going through PGT or IVF currently. So it's an interesting conversation when we're all talking about it and everybody's got their own challenges, obviously, but it can feel like a slightly lonely world because people don't know that your hospital team are as much a part of making your child as you two are." In our latest Podcast our CEO Kym Winter talks to Mary about her experiences of pre-implantation genetic testing (PGT), and Sarah Wynn from Unique - Understanding Chromosome and Gene Disorders about what the process involves. https://lnkd.in/ezmQPx3z #RareDisease #MentalHealth #RareMindsMatter #MEN1 #PGT

As #NationalSelfCare week comes to an end we thought we would remind you again - self care isn't selfish. What works for you to look after yourself will be personal to you, visit our Wellbeing Hub for some tips and ideas about how to look after the basics. https://lnkd.in/eAsm_Ycv #SelfCare #MentalHealth #RareDisease #RareMindsMatter

🔔 New podcast out! To celebrate #Movember Rareminds Founder Kym Winter talks to rare advocate David Hogan about the importance of mental health support for men impacted by rare conditions. Listen now: https://lnkd.in/egwGiVi5. #Movember #Movember2024 #MensMentalHealth #MentalHealthMatters #BreakTheStigma #ItsOkayToTalk #MentalHealthAwareness #SupportAndStrength #MentalWellness #MensWellness #Brovember #Rare #RareDisease #RareMindsMatter #MentalHealth

It's been just over a year since Rareminds got its full registered charity status and our new Board met for the first time. We're very grateful to our brilliant Trustees Paul Stevens, Sarah Wynn, Rachel Milroy and Michael Hartnett for all their hard work and support since. #TrusteeWeek #ThankYouTrustees #MakingADifference #RareMindsMatter

The results of our ‘Rare Minds Matter’ survey are on display at the World Orphan Drug Congress Europe today. #WODC #RareMindsMatter

Our survey results showed that access to counselling is strongly desired by both rare leaders and individuals as a means of supporting mental health and wellbeing. Just under half of individual respondents had independently tried to access mental health support, and the majority of those who had been offered support by a healthcare professional took up that support. It was clear from the experiences shared with us however that accessing support was not always straightforward - lengthly waiting lists, lack of rare disease awareness in mental health services, and irrelevant or inappropriate interventions all can act as barrier to accessing support. #WMHD2024 #WorldMentalHealthDay #RareMindsMatter #MentalHealthSupport #Counselling

"We run ‘dealing with diagnosis’ workshops, and when we first started running them, we assumed those signing up would be up to a year or so post-diagnosis. What we found was that people were wanting to sign up for them, perhaps 1, 2, 3, 4, or maybe 5 years, post-diagnosis, because they had not really had the opportunity to process its emotional impact, and its significance in their life. The experience of receiving a diagnosis, and the skill and sensitivity with which it is delivered, casts a long shadow." Kym Winter. Great new blog out today for #WorldMentalHealthDay from Genomics England exploring 'How can a genetic diagnosis impact mental health?' #WMHD2024 #RareDisease #MentalHealth #Diagnosis

Do you want information and tips about rare conditions and mental wellbeing delivered straight to your inbox? Sign up for the Rareminds newsletter here: https://lnkd.in/emcQWU87 #WMHD2024 #WorldMentalHealthDay #MentalHealth #MentalWellbeing #WellbeingSupport #RareDisease #RareMindsMatter #Newsletter # #MentalWellbeingTips #RareDiseaseSupport

🔔 The latest edition of the Rareminds podcast is out! Tune in to hear our CEO Kym Winter and Samantha Barber, the CEO of Gene People, discuss the #WorldMentalHealthDay2024 theme 'Mental Health in the Workplace' and how this can apply to staff/volunteers working in the rare community. Listen now on Spotify: https://lnkd.in/e3yupA9S #WorldMentalHealthDay #RaremindsMatter #RareDisease #MentalHealth #MentalWellbeing #WMHD2024

Practising a simple breathing technique every day can help to reduce feelings of anxiety generally. Regular practice also means you can build your skill and confidence in techniques before you need to use them in a situation that is stressful or upsetting. #WorldMentalHealthDay #WMHD2024 #RareMindsMatter #MentalWellbeing #BoxBreathing #BreathingTechniques #MindfulnessPractice #StressManagement #SelfCareJourney #CalmMind #MentalHealthAwareness #MentalHealthTips