Rareminds Podcast
By Rareminds
Other life stuff doesn't stop when you have a rare condition. We believe that talking more openly about how to manage all this while coping with your condition, is in itself a key part of looking after your mental wellbeing.
Coping with fatigue
Rareminds CCO Kym Winter talks to Jess Hobart from The UK Mastocytosis Support Group about coping with exhaustion and fatigue.For more information about mastocytosis visit https://ukmasto.org/Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare conditions. And we believe that rare minds matter. We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.A big thank you to Amicus, Parexel and Takeda for all their encouragement and being our series 2 sponsors.Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition - @raremindsukCrisis supportIf you are feeling overwhelmed do talk to someone straight away.There are a range of organisations and helplines to support you:NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).Emergency Services on 999 or go straight to your nearest A & E.You can also call a crisis line:SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.SHOUT: Text SHOUT to 85258The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.Samaritans: Phone 116 123Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
Social listening to understand mental health and rare conditions
This month Rareminds CCO Kym Winter, and CEO Lauren Roberts, are joined by Sian Moorcroft to discuss social listening as a research tool for understanding more about the way rare conditions can impact mental wellbeing.
Thanks to Partners for Access for sharing their Rare Pulse social media listening tool with us, and Cam Rare for allowing us to host a workshop at Rare Summit 2025 to discuss our thoughts and findings.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare conditions. And we believe that rare minds matter. We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Amicus, Parexel and Takeda for all their encouragement and being our series 2 sponsors.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition - @raremindsuk
Crisis support
If you are feeling overwhelmed do talk to someone straight away.There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
Coping with bereavement: Losing a child
Liz Curtis's daughter Lily died at 8 months from mitochondrial disease. She talks with Raremind's Founder and CCO Kym about the impact on her and her family, how they coped, and Lily's lasting legacy in the Lily Foundation. If you have been impacted by the issues discussed in this episode you can find support at:
Child Bereavement UK – call 0800 028 8840 Monday to Friday, 9am to 5pm, or email helpline@childbereavementuk.org
Cruse Bereavement Care – call 0808 808 1677 Monday and Friday, 9.30am to 5pm; Tuesday, Wednesday and Thursday 9.30am to 8pm; Saturday and Sunday 10am to 2pm
Grief Encounter – call 0808 802 0111 Monday to Friday, 9am to 9pm, or email contact@griefencounter.org.uk
Petals - https://www.tcf.org.uk/what-we-do/
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Amicus, Parexel and Takeda for all their encouragement and being our series 2 sponsors.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition - @raremindsuk
Music credit: Alex Grohl
Crisis support
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
What is mindfulness?
Our Clinical Trustee Rachel Milroy stands in for Kym this month to speak to Steve, our Mindfulness Lead here at Rareminds. They explore what mindfulness is (and isn't) and how you can start doing it today. You can find out more about mindfulness on the Rareminds Wellbeing Hub (www.rareminds.org/wellbeing-hub) and at https://www.breathworks-mindfulness.org.uk/.Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare conditions. And we believe that rare minds matter.We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.A big thank you to Amicus, Parexel and Takeda for all their encouragement and being our series 2 sponsors.Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition - @raremindsukMusic credit: Alex GrohlCrisis supportIf you are feeling overwhelmed do talk to someone straight away.There are a range of organisations and helplines to support you:NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).Emergency Services on 999 or go straight to your nearest A & E.You can also call a crisis line:SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.SHOUT: Text SHOUT to 85258The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.Samaritans: Phone 116 123Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
Glenn's story - coming to terms with my rare condition
Glenn talks to Rareminds CCO Kym about his experiences growing up with X-linked adrenal leukodystrophy. He shares how taking part in clinical trials and the loss of his brother as a child had a significant impact on his mental health, and his subsequent journey to come to terms with his condition.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Amicus, Parexel and Takeda for all their encouragement and being our series 2 sponsors.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
Crisis support
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
Talking about your rare condition
It is a very personal decision deciding how, and when, to let other people know about your own (or your child/ren’s) rare condition. We are all different with how comfortable we are sharing information about ourselves or how much we want to talk about something.
Rareminds CCO Kym talks to Belle Donati, broadcaster, journalist and parent of a child with a rare condition about the various considerations involved in deciding if, when, and how much to share about your, or your child's, rare condition.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Amicus, Parexel and Takeda for all their encouragement and being our series 2 sponsors.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
Crisis support
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
The value of community
For Mental Health Awareness Week 2025, Rareminds CCO Kym is joined by our Trustee, Rachel Milroy to discuss the value and challenges associated with being part of a community, and how this relates to the experience of having a rare condition.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Amicus, Parexel and Takeda for all their encouragement and being our series 2 sponsors.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
Crisis support
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123Calm
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
Experiences of pre-implantation genetic diagnosis (PGD)
Rareminds CEO Kym is joined by Mary who is currently undergoing pre-implantation genetic diagnosis (PGD) and Sarah Wynn, CEO of Unique to discuss what the process involves, and the challenges and benefits it can bring.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare genetic and undiagnosed conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Chiesi, Parexel and Vertex for all their encouragement and being our inaugural podcast sponsors for 2024.
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Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
Show notes:
Unique provides support, information and networking to families affected by rare chromosome and gene disorders.
Find out more about Multiple endocrine neoplasia type 1 (MEN1) on the AMEND website.
You can find out more about PGT from Genetic Alliance UK.
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123Calm
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
Men's mental health
For Movember Rareminds CEO Kym talks to David Ross, a rare leader and advocate who runs an international support group for men impacted by rare conditions.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare genetic and undiagnosed conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Chiesi, Parexel and Vertex for all their encouragement and being our inaugural podcast sponsors for 2024.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123Calm
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
Rare leaders: Mental health in the workplace
Rareminds CEO Kym talks to Sam Barber, CEO of Gene People about how to look after your mental wellbeing when working or volunteering for a rare condition group or charity.
Show notes:
There are various organisations who provide support for Rare Leaders:
Beacon provides patient group trainings help these often small and voluntary organisations to form, grow, and professionalise
GenePeople provide a Genetic Conditions Partnership Network and run an annual Leadership Symposium for leaders in the genetic condition community to discuss, learn and network on a wide range of topics related to genetic disorders.
Genetic Alliance UK is an alliance of over 200 charities and support groups. They provide support and information on policy issues and provide opportunities for you to engage with Parliamentarians.
EURORDIS - Rare Diseases Europe also resources and training for Leaders, across Europe including a new Mental Health Toolkit for patient organisations that is launching soon.
NCVO provide information and resources or all aspects of charity management.
Rareminds also provides intermittent 10 week 'Rare Resilience programmes' for Rare Leaders. If you would like to register your interest for any upcoming programmes please contact catherine@rareminds.org.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare genetic and undiagnosed conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Chiesi, Parexel and Vertex for all their encouragement and being our inaugural podcast sponsors for 2024.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123Calm
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
Couples under pressure: Coping with change & loss
Rareminds CEO Kym talks to couples therapist Susanna Abse about how couples can cope with change and loss.
Susanna has been a Couples therapist for over 35 years, and is the she’s the author of a recent book ‘Tell Me the Truth About Love’: 13 tales from the Couples Couch’. She has also published articles in publications like Vogue and the Guardian. She is a Trustee of the Association of Infant Mental Health, and a fellow of the Tavistock Institute of Medical Psychology.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare genetic and undiagnosed conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Chiesi, Parexel and Vertex for all their encouragement and being our inaugural podcast sponsors for 2024.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123Calm
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
You and your doctors: Navigating healthcare and building relationships
Rareminds CEO Kym Winters talks to Lucy McKay, CEO of Medics 4 Rare Diseases about navigating healthcare and building relationships with your doctors.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare genetic and undiagnosed conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Chiesi, Parexel and Vertex for all their encouragement and being our inaugural podcast sponsors for 2024.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123Calm
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
Kelly’s journey: Learning to self care as a parent carer
Rareminds CEO Kym Winters talks to Kelly Kearley, PTEN UK and Ireland Patient Group Manager, about her journey learning to care for herself while caring for her son with PTEN Hamartoma Tumour Syndrome (PHTS).
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare genetic and undiagnosed conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Chiesi, Parexel and Vertex for all their encouragement and being our inaugural podcast sponsors for 2024.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123Calm
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
Rare conditions & couple relationships
Rareminds CEO Kym Winters talks to Julia Segal from the Rareminds team about the ways living with, or caring for someone affected by, can impact couples.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare genetic and undiagnosed conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Chiesi, Parexel and Vertex for all their encouragement and being our inaugural podcast sponsors for 2024.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123Calm
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.
How rare conditions can impact mental health
Rareminds CEO Kym Winters talks to Stephanie Yin, a psychotherapist on the Rareminds team who also lives with her own rare condition, about the various ways living with, or caring for someone affected by, can impact your mental health & wellbeing.
Rareminds is a mental health charity providing counselling and mental wellbeing services for people impacted by rare genetic and undiagnosed conditions. And we believe that rare minds matter.
We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.
A big thank you to Chiesi, Parexel and Vertex for all their encouragement and being our inaugural podcast sponsors for 2024.
Follow us on Instagram and Linkedin for more suggestions to live as well as possible with your rare condition.
Music credit: Alex Grohl
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).
Emergency Services on 999 or go straight to your nearest A & E.
You can also call a crisis line:
SHOUT provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
The Samaritans provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to jo@samaritans.org but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123Calm
Calm Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, MIND also has some strategies to help you cope and feel calmer here.