Support shaped around each child

What the current pilot can offer

Parents and legal guardians in Scotland can enquire about practical help for a child under 18 with a confirmed rare disease. Tell us what would help, how it relates to the child’s circumstances and the likely cost if known. We will explain the next steps and the evidence needed before trustees assess a full request.

The examples below illustrate requests we may consider; they are not promises of an award or a list of services already delivered. The amount and type of support depend on available funds and trustee approval.

Equipment and practical items

We may consider mobility or sensory aids, therapy items and practical equipment that improves independence, comfort, safety or participation. Explain the problem the item would address and, if available, provide a supplier quote. Specialist items may need supporting professional advice so we can understand suitability.

Travel and access

We may consider help with travel connected to essential appointments, specialist care or suitable activities when rare disease creates additional barriers. Tell us where the family needs to travel, why the journey matters and the expected cost. We will discuss what is affordable and what other help may be available.

Family days and memory-making

A family day out or an inclusive activity may offer a child something positive to look forward to and time together away from appointments. Let us know the proposed activity, accessibility needs and costs. We consider suitability and affordability individually rather than offering a guaranteed experience package.

Wellbeing support

We may consider practical wellbeing items and clinician-recommended supplements where they form part of the child’s support needs. We do not diagnose conditions, prescribe treatments or replace the child’s clinical team. Any request involving clinical care must be guided by an appropriate healthcare professional.

How a request is assessed

1. Send an initial enquiry through our family support page. Do not include medical records in the enquiry form.
2. We explain the full application and how to provide professional confirmation of diagnosis securely.
3. Trustees consider eligibility, benefit, urgency, evidence and available funds. We aim to communicate a decision within five working days once the information needed for assessment is complete; this is an aim, not a guarantee.
4. If approved, we confirm the support and payment arrangements in writing. We normally pay the supplier directly.

Before you spend money

Please do not book an experience, order an item or incur a cost expecting reimbursement before receiving written approval. Suspected conditions without a confirmed rare-disease diagnosis are outside this pilot. Read our full grant terms for evidence requirements, decisions and reviews.

Support is considered individually and depends on available charitable funds. We may ask for further information so trustees can make a fair decision.