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Support

DC Action is part of an alliance of charities called Better Together for Healthy Marrow.

Thanks to National Lottery funding, we are able to provide our community with emotional wellbeing support, and access to a Benefits Advisor. Our emotional wellbeing support includes access to webinars, several courses as well as 1-2-1 support sessions. These provisions are available to both DC/TBD patients (and their families/carers) and are completely free of charge. Please note, one of our partner charities (The Aplastic Anaemia Trust) kindly hosts the registration pages for these services, just to reassure you that you are in the right place when you click through to make a booking.

You can find out more here  https://super-rare.org/get-support/

We offer a number of online courses throughout the year, including:

  • Managing Stress & Uncertainty
  • Mindfulness
  • Moving Forward: living the life that matters to you
  • Webinars – we run webinars on a number of emotional wellbeing topics, with new webinars open for registration at least every other month
  • One to one, couples or family tailored support from our psychology & family therapy team
  • Signposting to Supporting Information and Services

All of our support is provided to our communities without charge.

More details about Wellbeing Support are here https://super-rare.org/emotional-wellbeing-support/

Financial support

Dyskeratosis congenita patients may be able to access government and charity funding to help with travel costs associated with having the condition. You can find more information on this below.

Help with travel costs for NHS treatment and leisure

Depending on your income, you can get essential travel costs paid to and from a place where you receive certain types of NHS treatment. You may be entitled to this financial support if you are:

  • Getting Universal Credit, Income Support, income-based Jobseeker’s Allowance, income-related Employment and Support Allowance or the guarantee credit part of Pension Credit.
  • If you are getting Working Tax Credit and/or Child Tax Credit, you may also be entitled to help, depending on your income.

You can read more about help with travel costs on the NHS Choices website here: https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/

If you need someone to travel with you for medical reasons, you can get their travel costs paid as well.

You can claim a refund of your travel costs by filling in form HC5 and giving it to the place you go to for NHS treatment. If you can’t afford to pay your travel costs in advance, you can ask for an advance payment. Alternatively, you may be able to get help from your local authority.

Find out more here: https://www.nhs.uk/nhs-services/help-with-health-costs/

If you are not in one of the categories listed above, you might still be able to get help with your travel costs on the grounds of low income. More information on this can be found here: https://www.nhsbsa.nhs.uk/nhs-low-income-scheme/hc2-certificates-full-help-health-costs

Grants with Family fund

Family Fund is a children’s charity for disabled children and their families. They provide grants for hospital transport.

You can find out more on their website: https://www.familyfund.org.uk/

Healthwatch

Healthwatch is an organisation that helps people get the best out of the NHS and other healthcare services. Their website has useful advice and information on funding to help with travel costs:
https://www.healthwatch.co.uk/advice-and-information/2024-11-18/do-you-need-help-travelling-nhs-services

Disabled bus passes, taxi cards and parking permits

If you or a relative has Dyskeratosis Congenita, you may be eligible for a disabled bus pass, taxi card (if you live in Greater London) and parking permit. You can apply for these via the following links:

https://www.gov.uk/apply-for-disabled-bus-pass

https://www.londoncouncils.gov.uk/services/taxicard

https://www.gov.uk/apply-blue-badge