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Mental Health & Wellbeing Toolkit Reaching Beyond Rare

Rare and undiagnosed advocacy organisations provide crucial support for individuals with rare and undiagnosed conditions, offering a sense of community, peer support, and access to reliable information.

These groups for people living with rare conditions help people move from uncertainty into a space where their experiences are validated, improving psychosocial care and enabling earlier detection and preventative support.

Mental Health & Wellbeing Toolkit Reaching Beyond Rare

Despite the clinical diversity of rare conditions, many share common challenges, such as poor quality of life, stigma, and complex behavioural needs (e.g., sleep issues, pain, anxiety, social isolation).

This toolkit consolidates practical strategies to address mental health and wellbeing, aiming to enhance quality of life beyond just medical treatment.

WHAT IS THE PURPOSE OF THIS TOOLKIT?

The toolkit offers resources and strategies to help the rare and undiagnosed community enhance emotional wellbeing and support people living with rare conditions, caregivers, and families in living well. It includes:

Self - Care

Condition - neutral tools for self - care and empowerment.

Self - Esteem

Tools to improve self - esteem, adapt to the condition, manage daily impacts, and foster better communication and relationships.

Coverage

Coverage of the entire rare journey, from undiagnosed periods to ongoing care, for both individuals and families.

Guidance

Guidance on psychosocial needs, such as communication, mental isolation, managing uncertainty, preventing burnout, and building resilience.

STRUCTURE OF THE TOOLKIT

SELF - AWARENESS
RARE RESILIENCE
PRACTICAL TOOLS
CARING CONNECTIONS
MEANINGFUL MANAGEMENT

SELF - AWARENESS

Brief Description

Taking care of your own mental health and wellbeing is important for improving your quality of life – and not just yours, but also that of your friends and family. However, this often gets overlooked because managing the medical challenges of a rare or undiagnosed condition tends to take priority.

Parents, caregivers, and partners are the main source of support for people living with rare or undiagnosed conditions. But many of them don’t prioritise their own wellbeing because they fear it might take away resources or support from the person with the condition. Taking care of the wellbeing of parents, caregivers, and partners can have a positive impact on the quality of life of the person with a rare and undiagnosed condition. When families function well and caregivers feel supported, it can improve the person’s care and treatment outcomes. In fact, healthy family dynamics are one of the strongest indicators for better mental health and quality of life for everyone involved.

Key Topics

Awareness of Emotional Wellbeing: Understanding the importance of your own emotional health is key. Tools are available to assess and monitor how you’re feeling and coping with day – to – day stress.
Promoting Positive Self-Identity: Focusing on building self – esteem, practicing self – care, and coming to terms with a rare condition can help create a positive mindset and improve overall wellbeing.

RARE RESILIENCE

Brief Description

Building resilience in people living with rare or undiagnosed condition and their families can greatly improve their quality of life. Key strategies include developing skills like communication, advocacy, and coping with uncertainty and anxiety. Self-confidence and your capacity to act (self – efficacy) play a critical role in reducing emotional distress and improving quality of life, especially when combined with social support.

Effective coping strategies, such as connecting with support networks, psychological counselling and learning to manage emotions and uncertainty, are essential. These strategies should be tailored to individual needs and help address both short – term and long – term challenges.

Key Topics

Self-Efficacy: Encouraging open communication to reduce stigma and help PLWRD and families share their experiences.
Coping Strategies: Managing uncertainty, anxiety, resilience, sleep issues, burnout, and social isolation.
Strengthening Support Systems: Building strong relationships, with a focus on supporting couples and families, is vital for emotional wellbeing.

PRACTICAL TOOLS

Brief Description

Living with a rare or undiagnosed condition brings daily uncertainty, making it hard to plan for the future. The rarity and lack of knowledge about these conditions can be overwhelming for people living with rare conditions, families, and caregivers, who seek reliable information to advocate for their needs. However, receiving too much unfiltered information can increase stress and anxiety. Effective communication with health and social care providers is crucial to ensure both physical and mental health needs are addressed. Professionals play a key role in improving quality of life, but many lack knowledge of rare conditions, leading to insufficient support, confusion, and eroded trust in health and social care services.

Key Topics

Access to Information: Reliable details about the condition, treatments, side effects, rights, and guidance to finding specialist and second opinions.
Navigating the Care System: Tools for preparing for appointments and addressing both physical and emotional needs.
Advocating for Psychosocial Care: Raising awareness of the importance of psychosocial support and exploring different models of care to provide comprehensive support.
Impact of rare conditions on mental health: Medical and social care teams should understand the mental health impacts of rare conditions and provide personalised support to address both physical and psychological needs, while mental health professionals should be aware of the psychological challenges associated with rare conditions.

CARING CONNECTIONS

Brief Description

Being part of a community of people with the same rare and undiagnosed condition can be life changing. It reduces isolation, helps families cope, and lessens uncertainty. Connecting with others who understand your situation can break down stigma and create space for sharing experiences. Advocacy groups offer valuable support, helping individuals build relationships, share information, and improve health outcomes through peer support.

Becoming an advocate for your condition can provide a sense of purpose and empowerment, whether through raising awareness, participating in research, or creating a supportive community.

Key Topics

Finding Communities: For those without a condition-specific group, private social media groups and virtual communities offer support.
Advocacy Groups and Activities: Many groups provide various support options like telephone support, events, family weekends, and activities such as sports or arts. They also offer support for caregivers and families, including skills training.
Peer – to – Peer Support: One – on – one peer support, group mentoring, mindfulness for stress, and bereavement groups help individuals and families manage the challenges of living with rare and undiagnosed conditions.

MEANINGFUL MANAGEMENT

Brief Description

People living with rare and undiagnosed conditions and their families face significant challenges, many of which stem from the rarity of the condition and a lack of understanding. These challenges can change over time and often add stress on top of managing the condition itself. A major unmet need for people affected by these conditions is psychological health, with common emotional and mental health struggles shared across families, despite the variety of rare conditions.

Key Topics

Common Quality of Life (QoL) Issues: Many people affected by a rare and undiagnosed condition experience poor sleep, anxiety, depression, sadness, and pain management difficulties.
Complex Behaviours and Psychological Impact: Rare and undiagnosed conditions can cause behaviours that create significant emotional challenges, affecting the whole Ffamily and leading to unmet psychological needs.
Stigma and Emotional Stress: Families often face emotional stress from how others perceive their visible and invisible differences or disabilities, compounded by a lack of understanding about the condition.

List of Tools & Resources

SELF - AWARENESS
RARE RESILIENCE
PRACTICAL TOOLS
CARING CONNECTIONS
MEANINGFUL MANAGEMENT

Wellbeing Hub

The Wellbeing Hub is a resource designed to support the mental and emotional wellbeing of individuals affected by rare conditions. It offers tools, guidance, and resources to help patients, caregivers, and families manage the psychological challenges associated with living with a rare condition.

The hub focuses on promoting mental health, providing coping strategies, and fostering a supportive community for those impacted by rare conditions. It aims to enhance overall wellbeing and resilience for people navigating the complexities of rare condition care. Rareminds

Thought Records (Psychology Tools)

A thought record is a cognitive behavioural therapy (CBT) exercise that helps capture and examine your thoughts and feelings about a situation using seven prompts. It helps you understand the connection between thoughts and behaviours, identify unhelpful patterns, and challenge or reframe them in a healthier way. Psyhology Tools, Every Mind Matters

Factsheets on self - care and in the rare condition community

Free online factsheets on self-care and wellness support inkling emotions tracker for rare caregivers; self-care for rare caregivers; reinforcing self – compassion; taking care when you are a rare caregiver, etc. Give an Hour

Emotional Journey Map & Guidebook

Guide to support self – care and skill – building for caregivers along the rare condition pathway from diagnosis through to care and follow up. The resource helps to identify challenges and their impact on the caregiver’s wellbeing and provide some advice on the support needed.

Also provide free emotional support groups for parents and provide a grief groups (weekly and monthly) available to any community.

Raregivers, Supportgroup

Self - help CBT techniques

Cognitive Behavioural Therapy (CBT) is a talking therapy that helps change the way we think and act to manage life problems. It focuses on the link between thoughts, feelings, and behaviours, and how unhelpful patterns can create a negative cycle. CBT helps identify and break these patterns, encouraging healthier ways to approach problems and improve wellbeing.

Self – help CBT techniques has been shown to be clinically effective in improving anxiety, low mood, stress and sleep problems. Free online resources are available on reframing unhelpful thoughts; tackling your worries; problem solving facing your fears; etc.: Every Mind Matters

How to talk to others about a Rare Condition, Wellbeing Hub

Rareminds Wellbeing Hub has tools and support to help you talk about a rare condition with other people.

Applying Mental Health First Aid in a Rare Disease Context (Course)

This free online course aims to support those working with the rare condition community in Mental Health First Aid, focusing on understanding mental health in the context of rare conditions, applying Mental Health First Aid within this community, promoting awareness of available resources, and outlining the role of rare condition organisations in supporting mental health.

It also highlights the importance of self – care and support for employees and volunteers in rare condition organisations. Rarevoices, Mental Health First Aid International

Top Tips: Mental Health & Wellbeing from parents for parents

Example of mental health and wellbeing – top tips informatic from parents to parents. Developed for the rare growth conditions but can be also developed for other conditions. Child Growth Foundation

Health Journal

A health journal is a personal record where individuals track various aspects of their physical and mental health. It can include details such as daily symptoms, mood, medication, exercise, diet, sleep, and any other factors affecting wellbeing. The purpose of a health journal is to help individuals monitor changes in their health over time, identify patterns, and make more informed decisions about their lifestyle and care. It can also be a helpful tool for communicating with healthcare providers.

Example of a health journal developed for Juvenile Myositis. Myositis Support & Understanding

‘Five Ways to Wellbeing’ website

‘Five Ways to Wellbeing’ presents five simple, research – based methods to improve psychological and emotional health. It emphasises the importance of mental health alongside physical health for overall wellbeing. By incorporating small daily practices, you can enhance your happiness, longevity, and ability to cope with stress. The website provides practical tools and resources to help you integrate these methods into your daily life, whether at home, work, or school, at no cost. Five Ways to Wellbeing

Beyond Blue Wellbeing Action Tool & supporting factsheets

Online tool to find what works for you to improve wellbeing. The online tool has access to guides including what works for mental wellbeing, what works for depression and what works for anxiety. Beyond Blue

myCompass & Self

myCompass is a free online tool that guides you through scientifically proven activities that helps you identify unhelpful thoughts, feelings, and behaviours, and learn strategies to deal with them. Beyond Blue

Advice on how to care for your mental health

Informative webpage on how to care for your mental health including linked to webinar on simple steps to focus on emotional wellbeing; and other resources on mental health and chronic conditions. Myositis Support & Understanding

TSC TANDem Checklist

The TSC TANDem Checklist is a tool that help patients, caregivers, and healthcare professionals to prepare and take part in a medical appointment, specifically by ensuring the medical, emotional and any other holistic needs are address. TANDem

TSC TANDem toolkit: Advice on accessing psychosocial care

The TSC TANDem toolkit provides advice on what you can do and how to access psychosocial care: TANDem toolkit

Psychosocial care programme

ALAN provides a psychosocial care model through a consultation service that offers psychological counselling and social support. This service helps individuals navigate healthcare access, administrative procedures, social rights, education, work, family life, and social inclusion. The team also offers recreational and physical activities to enhance wellbeing, self – confidence, and self – esteem. Additionally, ALAN facilitates interdisciplinary exchanges between healthcare, social, and educational professionals to improve holistic support. ALAN

Rare 1-0-1 Online Training

Rare Disease 101 is a free online training course designed for medical professionals with limited knowledge of rare conditions. It covers the basics of rare conditions, how to recognise them, the challenges faced by individuals with rare conditions, and how to provide support. The training includes the impact of rare conditions & mental health. M4RD

Be - Well Checklist

The Be – Well Checklist can be helpful for parents of children with rare conditions and complex needs (i.e. severe learning disabilities). Mental well – being is considered as part of the check list, but it notes that the first thing that may be noted is behaviours that challenge as communication of distress: CEREBRA

Guide for Parents, Professionals & Teacher Training

Cerebra Network has produced numerous guides for parents of children with the most complex needs on a wide range of topics such as sleep, pain, anxiety, sensory processing and how to manage challenging behaviour, among others. As well as teacher training resource.

CEREBRA, FIND, The Behaviour Checklist

The Network has a bank of resources for clinicians to support a range of syndromes such as Prader-Willi, Angelman, Fragile X, etc. on a range of topics including mood, behaviour, walking etc.

FIND

The Network has produced a specific anxiety guide for those who are autistic and who speak few or no words (inclusive of those with rare genetic syndromes): Ladders Project

The Network has produced a valid and reliable anxiety assessment for clinicians supporting those with learning disablities and who speak few or no words (inclusive of those with rare genetic syndromes). This can be requested here: Aston University

They also provide a resource to raise awareness and understanding of the complex needs of children with genetic syndromes, and to support educational practitioners and teachers who are working with these children. FIND

Simple App to health read complicated letters

Read Simple is an app that helps people read complicated letters, using AI in different languages including Dutch, English, Turkish, Arabic and Ukrainian. Helpdesk

“This is Me” Rare Disease Patient Passport

This is Me” Rare Disease Patient Passport is a tool developed for any condition, any age and anywhere.

The Patient Passport is a personalised tool designed to help individuals with rare conditions communicate key information about their condition to healthcare providers. It includes details such as medical history, symptoms, treatments, and specific needs, ensuring that people living with rare conditions receive appropriate and informed care.

This passport aims to improve the healthcare experience for those with rare conditions by providing a clear, accessible summary of their health information. Cam RARE

Parkinson Monitor’s Tool - How get the most from a phone or video appointment

Online practical tips and advice for people who are new to phone or video appointments. It helps them prepare for these virtual consultations to ensure they get the most out of their healthcare experience. Developed for people living with Parkinson’s but can be adapted for other communities. Parkinson

Checklist of what to bring with you for any medical appointment

Practice tips for preparing for a doctor’s appointment when you have a rare condition. PicnicHealth

Top Tips for Newly Diagnosed with a RARE Disease

Practice tips for people who have been newly diagnosed with a rare condition including on joining a Facebook Group and one – to – one free advice from Rare Concierge Patient Service Guides.

Top Tips for Newly Diagnosed with a RARE Disease

To the Newly Diagnosed: Top 5 Things You Should Know

Office for Rare Conditions

The Office for Rare Conditions Glasgow supports families to access the care and support they needs, providing someone to help navigate the healthcare system, signposting to resources, services and support groups; whilst working with healthcare teams and providing educational resources. Office for Rare Conditions

Clinical guidelines & Standards of Care: Plain Language Versions

Many of the European Reference Networks develop plain language summaries of clinical guidelines. These summaries can be helpful for individuals living with a rare condition and their families to know what care and treatment they should be able to access and support their self – advocacy.

Information Hub & Factsheets

Example of Information Factsheets for families and healthcare professionals, developed by CMTC – OVM, including special leaflet describing the psychological and psychosocial aspects of life with a rare condition, such as CMTC, in general terms. CMTC

Example of an advocacy group’s information for families about the condition, for new diagnosis and educational support, by Usher Kids. Usher Kids

Pedia – online searchable database

Pedia – online searchable database including material related to the condition, treatment, anxiety, pain management, psychosocial support and psychological support. CMTC

Blueprint to Psychosocial Care

The EURORDIS Blueprint for Psychosocial Care outlines a structured approach to address the psychosocial needs of people living with rare diseases and their families. It provides recommendations to develop psychosocial programmes that enhance existing medical care.

The blueprint defines psychosocial care, identifies barriers to accessing support, and proposes standards across eight domains, including holistic care, prevention, and family orientation. It advocates for integrating psychosocial care as a core component of medical care. EURORDIS Blueprint

Echo Training

EDS ECHO is a series of programs and courses for healthcare professionals across all disciplines who want to improve their ability to care for people with Ehlers – Danlos Syndromes (EDS), hypermobility spectrum disorders (HSD) and associated symptoms and conditions. EDS

Anxiety Guide for people living with autism

This online resource includes a guide an anxiety in autistic people who speak few or no words which can occur in many groups have genetic syndromes. Also included is a link to request a validated anxiety screening measure for anxiety in people with learning disabilities who speak few or no words (many of whom have rare syndromes). Ladder Project

Support Group(s)

Support groups provide a sense of belonging and understanding that may be hard to find elsewhere. They allow members to share their experiences, challenges, and successes with others who truly understand their journey.
Example of Support Groups:

USH Summer Camp

Usher Kids UK host a week – long residential ‘USHthis camp’ for 11 – 25yr olds who live with Usher syndrome, to build friendships with peers, mentors and role models whilst support fostering skills and confidence. Usher Kids UK

Information, guidance and support groups for children, young people and adults with severe learning disabilities

Contact a family: https://contact.org.uk/
Unique: https://rarechromo.org/
Challenging Behaviour Foundation: https://www.challengingbehaviour.org.uk/

TSC TANDem Toolkit

The TSC TANDem Toolkit is a resource developed for individuals living with Tuberous Sclerosis Complex (TSC), a rare genetic disorder. It provides information and tools to help patients, caregivers, and healthcare professionals manage the condition more effectively.

The toolkit includes advice on sleep problems, anxiety and behavioural challenges.

The toolkit can be adapted by other patient communities.

Toolkit

Beyond Blue Wellbeing Action Tool & supporting factsheets

Online Resources

Online resources to support being active, nutrition, sleep, oral care, online training and treatment. European Huntington Association

Caregiver Skills Training

Skills training for carers of children with a developmental delay or disability. World Health Organization

DISCLAIMER

It’s okay to feel anxious, stressed, or low in mood – please don’t be ashamed to talk about it.

Living with a rare condition can be incredibly challenging. There are good days and bad days, and it’s normal to feel overwhelmed by loss or change. What matters most is remembering that acknowledging you’re not okay is a courageous and important step toward getting the support you need.

If you are feeling suicidal, you are not alone – there is always hope and help.

You can contact a suicide prevention helpline at any time. Visit the International Suicide Hotlines website for a list of support numbers available 24/7.

CO - CREATION PROCESS

EURORDIS initiated a co – creation process to develop a Mental Health Toolkit for Rare & Undiagnosed Conditions, starting at the EURORDIS ECRD Conference in May 2024.

This process involved six online workshops, bringing together over 40 experts, including individuals with lived experience and clinical professionals, to collaboratively design
the toolkit.

ABOUT EURORDIS - RARE DISEASES EUROPE

EURORDIS - Rare Diseases Europe

EURORDIS – Rare Diseases Europe is a unique, non - profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

EURORDIS’ vision

EURORDIS’ vision is a world where all people living with a rare disease can have longer and better lives and can achieve their full potential, in a society that values their well-being and leaves no one behind.

E-Mail: matt.johnson@eurordis.org Matt Bolz-Johnson, Mental Wellbeing Lead & Healthcare Advisor.

ABOUT RARE CONDITIONS AND EURORDIS-RARE DISEASES EUROPE