Financial support

Money worries can also impact your mental health. You might find it difficult to talk about, or know how to address money worries. There are people and organisations who can help.

It is not uncommon for your finances to be impacted as a result of additional expenses related to your rare condition. This may be due to travelling to and from hospital, additional dietary needs, or other needing other forms of support. It could also be as a result of your working life changing.

You may be entitled to claim certain state benefits or support. These can be complex to apply for, but there are organisations who can advise you. Your condition-specific organisation may also be able to support and guide you in doing this.

Some organisations also offer grants to help with the cost of disability aids, one-off holidays, or special days out.

Social care & education support

Practical support for you, your child, or both of you, can make a big difference in managing the impact of a rare condition.

This might include:

• • special equipment for your home, school or workplace
  • disability or mobility aids
  • physical adaptations to your home, place of education, or workplace
  • respite care or personal support

Workplaces and schools must under law consider ‘reasonable adjustments’ to help people with additional needs or caring responsibilities engage in work and education. 

Service providers, schools and employers may be less familiar with rare conditions and their variety of impacts. It can take some time and perseverance to get what you need. This can be frustrating and stressful, but try to keep going.

Rare condition organisations can often advise you on what might be helpful and possible. Local organisations can often provide support too.

Support for carers

Caring for a child, partner or other family member can be physically and emotionally demanding.

It is important not to overlook your own emotional health and wellbeing.

You may not see yourself as a carer, particularly if you are a parent-carer to a child with lots of additional or complex needs. However, carers support is there for anyone who supports another person who could not manage without that help. This could be a child, parent, other family member, or a close friend.

Parent-carers can find local organisations through the SEND Local Offer pages of your Local Authority’s website.

Young Carers (children under 18 who help look after a sibling or parent with a rare condition) may also be able to receive additional help at school, including emotional support or counselling. There are also support groups and days out that can help a young carer have ‘time off’, and be with other young people managing similar experiences.

Letting the school know can also help teachers be more aware when a young person has additional responsibilities or concerns at home that might affect their studies or behaviour.

Register with your GP as a carer

It is important to register with your GP as a carer. This can help you access a range of support and help. They may also be able to be flexible with things like appointment times.

You can do this by speaking to the Receptionist at your surgery, or filling in a Carers UK Template to give (or post) to your GP Practice.