Roadmap Rare diagnosis Everyday Life

Living with a chronically ill and/or disabled family member regardless of cause is a shared experience which impacts all aspects of family life. A shift of time and energy spent in search of an answer to more focus on caring for the needs of all involved can help with taking the next steps forward.

Living with a rare condition

Following a rare diagnosis, there may be few or no changes to daily life. It can be very helpful to evaluate priorities and consider factors such as household routines, needs of family members at different life stages and whether current expectations are workable on an ongoing basis.

Resources

Summaries of potential impacts and encouraging messages for families living with a chronically ill and/or disabled family member.

• Healthy Children | how chronic illness affects the family
• Navigate life Texas | helping your child live with chronic illness
• Raising Children Network | child disability-people's reactions

Practical tips for daily life while searching for or just after receiving a diagnosis.

• Navigate life Texas | children with multiple disabilities- rare conditions or are undiagnosed

Tips and practical advice for specific aspects of family life and wellbeing.

• Raising Children Network | family routines & children with disability
• Contact UK | family life, work & childcare
• Challenging behaviour Foundation
• Center for Disease Control | keeping children with disabilities safe

Tips for fathers to be involved in the lives of their children with additional needs.

• Champions for children with disability | father's involvement is important

Comprehensive guidebooks covering multiple aspects of family life involving caring for a child with a rare disease.

• The National Alliance for Caregiving | guidebook for caregivers of children with rare conditions
• Contact UK | guidebook for living with a rare condition

Mental health & wellbeing

It is very common to experience fluctuating thoughts and feelings regarding the impact of a rare diagnosis. Challenges associated with balancing the needs of all family members can cause prolonged stress and have significant implications for physical and mental health. Connections with support services and others experiencing similar practical and emotional challenges can be very helpful in reducing isolation and creating opportunities for sharing of experiences.

Resources

General information about feelings after a diagnosis of disability or additional needs in a child.

• Raising Children Network| children with disability: parent feelings

Professionals with expertise in rare diseases offering individual or couples counselling online (including internationally).

• Rare Minds | private therapy services

Resources and information for you/your family to live as well as possible with a rare condition.

• Rare Minds | wellbeing hub
• Carers UK | your health & wellbeing

Help with mental health services and support for people with intellectual disability.

• Intellectual disability mental health connect | I am a person with intellectual disability
• Mental Health UK | children and young people with learning disabilities and their mental health

Toolkit for parents about mental health and neurodevelopmental conditions in children with genetic conditions.

• Cerebra UK | mental health in children with rare genetic conditions

Supportive information for fathers of children with additional needs.

• Fatherhood | handling grief: supporting fathers of children with special needs

Financial aspects

Significant financial concerns often arise from multiple factors such as loss or reduction in employment as a result of increased care needs and direct costs associated with multiple specialist appointments, testing and equipment.

Resources are available to help with accessing financial assistance for many aspects of daily life including income support, carer’s allowance, housing benefits, equipment funding, disability living allowances, prescription allowances as well as travel and accommodation costs.

Resources

A profile of carer policies and practices in 18 countries;

Australia, Canada, Denmark, Finland, France, Germany, Hong Kong, India, Ireland, Israel, Italy, Japan, New Zealand, Spain, Sweden, Taiwan, UK and USA.

See the following sections in country of interest-

2. Financial support: income support, pensions and benefits.

3. Work and Education: carer-friendly workplaces and educational initiatives.

• International Carers | multinational policies & practices for carers

Country specific information about financial support for carers and entitlements for those being cared for.

• Carers UK | financial support
• US gov | disability services
• Disability Support Services Aus | benefits & payments for people with disability & carers
• Cerebra UK | money matters
• National Organization for Rare Disorders US | financial assistance for patients with rare dieases

Suggest a resource: send email to gcwg@udninternational.org