Grant Application Terms

Purpose

These terms set the launch rules for applications for practical support for children affected by rare disease in Scotland.

Who may apply

• The applicant must be a parent or legal guardian applying for a child under 18 who lives in Scotland.

• The child must have a confirmed diagnosis of a rare disease. A suspected condition or an ongoing investigation without a confirmed diagnosis is not eligible.

• The request must further the charity's purposes and provide a clear benefit linked to the child's diagnosed rare disease or family circumstances.

What support may cover

Support may include equipment, travel, wellbeing support, inclusion activities and urgent practical family needs linked to the child's condition. The amount and form of support are considered individually and depend on available charitable funds and trustee approval.

Evidence and information

Applicants must provide accurate, complete information and professional evidence confirming the child's rare-disease diagnosis. We will normally accept a diagnostic letter, clinic letter stating the confirmed diagnosis, or written confirmation from an appropriate medical professional. An appointment letter, referral, suspected diagnosis or evidence that investigations are continuing is not sufficient. We do not normally require the child's full medical record unless it is genuinely necessary to verify eligibility. Applicants must have authority to provide information about the child and any other person named.

Assessment

At least two trustees who are free from relevant conflicts of interest must approve an award and its payment. Decisions consider eligibility, charitable benefit, urgency, evidence, safeguarding, cost, alternative support, available funds and fairness between applicants. Trustees may offer a different form or amount of support from that requested.

Timing

We aim to communicate a decision within five working days after receiving the information needed to assess the request. Urgent cases may be considered sooner. This is an aim, not a guarantee, and delays may occur while evidence, supplier details, safeguarding information or trustee approval is obtained.

Payment and purchasing

We normally pay an approved supplier or service provider directly. The charity chooses whether to purchase, reimburse or use another controlled method. No applicant should place an order or incur a cost in expectation of payment unless the charity has given written approval. Support cannot normally be exchanged for cash, transferred or used for another purpose.

Conditions of an award

• The award must be used only for the approved purpose.

• The applicant must promptly disclose relevant changes or duplicate funding.

• The charity may request invoices, receipts, delivery confirmation or reasonable feedback.

• Unused funds or items obtained through materially false information may be recovered where lawful and proportionate.

• Receiving support is not conditional on publicity, fundraising, photographs or sharing the family's story.

No entitlement and conflicts

An application does not create an entitlement. Trustees may refuse an otherwise eligible request because funds are unavailable or another request has greater priority. A trustee connected to an applicant, supplier or decision must declare the interest, take no part in the decision and follow the charity's conflicts procedure.

Review of a decision

An unsuccessful applicant may request one written review, normally within 14 days of the decision, explaining the alleged error or providing relevant new information. A trustee who did not take part in the original decision will conduct the review where practicable. The review outcome is final within the charity's process, without limiting any legal right or the right to complain about how the process was handled.

Privacy and safeguarding

Information is handled under the Privacy Notice. If information indicates that a child or another person may be at risk, the charity may act and share necessary information under its Safeguarding and Child Protection Policy. Consent is not always required where disclosure is necessary and lawful to protect someone.