Rareminds

Specialised mental health and wellbeing services for the rare disease community.

[Rareminds @RaremindsUK]

Lesson 5 of our collaboration with @M4RareDiseases is now out - sign up now for free at https://t.co/tBfMOMpkRt. #MentalHealth #RareDisease #RareMindsMatterhttps://twitter.com/M4RareDiseases/status/1689598992517050368?s=20

[Rareminds @RaremindsUK]

So pleased to be working with @tsa_charity on supporting the #CACNA1C community. #RareDisease #RareMindsMatter #MentalHealth

[Timothy Syndrome Alliance (TSA) @tsa_charity]

'Mind the Gap' parent & individual/couples counselling supports those impacted by #CACNA1C. This work has been made possible by an award from Postcode Local Trust, a grant-giving charity funded entirely by players of People’s Postcode Lottery.
@PostcodeLottery @RaremindsUK 🙌💪❤️

[Rare Disease Day @rarediseaseday]

Do you want to be part of the official #RareDiseaseDay 2024 video? 📽️

Now is your chance!

To send in your contributions or get more information on how you can get involved, DM us or contact us at [email protected]!

#LightUpForRare #ShareYourColours #video

[MedicsforRareDisease @MedicsForRare]

RECAP! ✋Available lessons!!

🧠 Lesson 1: Introduction to Mental Health and Rare Disease
👩‍⚕️ Lesson 2: The Rare Disease Journey
🧬 Lesson 3: Mental Health and Inherited Genetic Conditions
🔍 Lesson 4: Assessing Mental Wellbeing

Begin now!
@RaremindsUK
https://t.co/fy6JlKBbbX

[Rareminds @RaremindsUK]

Listen to our CEO & Founder @KymWinter discussing the impact of rare diseases on mental health & wellbeing at the recent @EURORDIS webinar (27 mins in). #raredisease #mentalhealth #raremindsmatter
https://t.co/1rza1umc3l

[Rare Disease Research Partners @RD__RP]

Our service in collaboration with @RaremindsUK offers study sponsors the opportunity to provide counselling to patients. For more information, contact our team. View our full research poster here https://t.co/CHyi7Cd2xT #clinicaltrials #research #counselling #rareminds

[Rareminds @RaremindsUK]

We're so excited to be working with @RD__RP on this project to pilot provide specialist counselling to #RareDisease clinical trial participants!
#MentalHealth #RareMindsMatter #ClinicalTrials

[Rareminds @RaremindsUK]

Managing the complex emotions & family dynamics associated with inherited #genetic conditions can be difficult and adversely affect mental health.
Explore these risks & how to support in lesson 3 of '#MentalHealth & #RareDisease.
https://t.co/qyocH7xKzC

[MedicsforRareDisease @MedicsForRare]

Lesson 3, ‘Mental Health and Inherited Genetic Conditions’’ of the 'Mental Health and Rare Disease' course is now live! Discover more about how rare diseases can affect #mentalhealth by logging on to M4RD Learn. Made in collaboration with @RareMindsUK.
https://t.co/fy6JlKBbbX

[Rareminds @RaremindsUK]

Lesson 2 of our partnership with @M4RareDiseases is now out. Sign up for your free account to find out more about how the #raredisease journey can impact mental wellbeing - pls share.
#MentalHealth #RareMindsMatter
https://t.co/tbBHQXHyXv

[MedicsforRareDisease @MedicsForRare]

Lesson 2, ‘The Rare Disease Journey’ from the 'Mental Health and Rare Disease' course is now live! Discover more about how rare diseases can affect #mentalhealth by logging on to M4RD Learn now! made in collaboration with @RareMindsUK.
https://t.co/fy6JlKBbbX

[Rareminds @RaremindsUK]

We're so excited to be working with @RD__RP on this project to pilot provide specialist counselling to #RareDisease clinical trial participants!
#MentalHealth #RareMindsMatter #ClinicalTrials

[Rare Disease Research Partners @RD__RP]

We are delighted to announce our NEW COUNSELLING PILOT INITIATIVE in partnership with @RaremindsUK

If you would like more information about this invaluable service, please get in touch with our team at [email protected]
#clinicaltrials #rarediseases #counselling

[Rareminds @RaremindsUK]

Our CEO @KymFWinter is currently talking at the @eurordis workshop about the work of @Rareminds, and how #mentalhealth is the missing puzzle piece for #raredisease care. #RareMindsMatter

[Rareminds @RaremindsUK]

Too often #MentalHealth is treated as secondary to physical health. In #RareDisease however there are often complex interacting emotional & physical symptoms - both need to be addressed & supported. #RareMindsMatter https://t.co/fzXOpmVfgR

[SAMHSA @samhsagov]

Remember: There is no health without mental health! #MentalHealth is just as important as physical health, and asking for help is a normal part of life. You should never feel like you have to take on the world 🌎 alone.

[Rareminds @RaremindsUK]

#MentalHealth support must become a standard part of #RareDisease care. Final chance to register for the @eurordis webinar exploring this issue featuring our CEO @KymFWinter. #RareMindsMatter

[EURORDIS-Rare Diseases Europe @eurordis]

🚨 Final call! 🚨

There are just two days left to register for our upcoming webinar on the Impact of Rare Diseases on Mental Wellbeing! 🧠 #mentalhealth

Find out more:
https://t.co/MsTmroyJKM

@RaremindsUK @MHESME @mattbolzjohn @RD__RP

[Rareminds @RaremindsUK]

#MeetTheTeam! David is our counsellor working with
@AmendInfo & @ChildhoodTT. He's also a qualified clinical supervisor & takes a lead role in overseeing our background clinical processes & procedures.
#RareMindsMatter #MentalHealth #RareDisease

[Rareminds @RaremindsUK]

Effectively supporting the #MentalHealth & #Wellbeing of #RareDisease patients requires appreciation of their lived experience & the complex challenges they face in relation to their particular condition. New online course by @m4rd & @RaremindsUK dropping weekly - pls share.

[MedicsforRareDisease @MedicsForRare]

We are so happy to bring you the first lesson of our BRAND NEW online course which explores 'Mental Health and Rare Disease’! 🦓 Made in collaboration with the amazing @RaremindsUK - lessons will be going live weekly, starting today. Begin now! https://t.co/fy6JlKBbbX

[Kirsten Johnson, FRSA @DrKirstenJ]

This is a fantastic resource! Thank you @RaremindsUK and @M4RareDiseases for creating this course, it's wonderful! @CerebraNetwork @PWCentre @rarediseasesint @eurordis

[Rareminds @RaremindsUK]

Such a privilege to work with the @M4RareDiseases team on these resources. Health care professionals play a key role in supporting the #MentalWellbeing of people impacted by #RareDiseases. #MentalHealth support must become a standard part of rare disease care. #RareMindsMatter

[MedicsforRareDisease @MedicsForRare]

We are so happy to bring you the first lesson of our BRAND NEW online course which explores 'Mental Health and Rare Disease’! 🦓 Made in collaboration with the amazing @RaremindsUK - lessons will be going live weekly, starting today. Begin now! https://t.co/fy6JlKBbbX

[Rareminds @RaremindsUK]

So excited for this launch today - keep your eyes peeled for the first module coming later today! #RareMindsMatter #MentalHealth #RareDiseases

[MedicsforRareDisease @MedicsForRare]

We have news!! Lesson 1 of our mental health module is released this TUESDAY! 😮

We're so happy to finally bring this to you, which has been made in collaboration with @RaremindsUK ! Keep a look out! #DareToThinkRare

[Rareminds @RaremindsUK]

"..I get very embarrassed in social environments having to apply my treatments. As applying creams is not seen as a manly thing by society."
Having a #RareDisease can impact all areas of life, especially self esteem. #MensHealthMonth #MensMentalHealthMonth #MentalHealth