Each year our charity allocates some of its funds, which are raised through individual donations and fundraising, towards our Family Support Fund. The support fund is there to support eligible families and individuals in the UK affected by CGD who need financial support with any medical related costs.
Who can benefit from the Family Support Fund?
The Family Support Fund has been established primarily to assist families based in the UK who are affected by CGD.
Grants can be made to the following groups:
- adults who are affected by CGD
- adults who have had a bone marrow transplant to cure CGD,
- parents/carers of children affected by CGD
- parents/carers of children who have had a bone marrow transplant to cure CGD
Anyone applying to the Family Support Fund must first register to become a member of the CGD Society. This process is free and takes just a few minutes.
What kind of expenses does the Famiy Support Fund cover?
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The Family Support Fund covers two types of expenses that are listed below.
Expenses that can be self-referred to the charity:
Annual Prescription Pre-Payment Certificates (PPCs) for adults affected by CGD and X-linked carriers in England* between the ages of 16 and 60 who do not qualify for any other type of payment exemption. Please note these need to be renewed annually by contacting the CGD Society. You will be asked to provide a copy of a clinic letter with your diagnosis and medication list to the CGD Clinical Nurse Specialist. For further information on whether you quality for a free or reduced cost prescriptions, please refer to http://www.patient.co.uk/health/Free-or-Reduced-Cost-Prescriptions.htm
* Prescriptions are free to all in Northern Ireland, Scotland and Wales.
Expenses related to hospital admissions or any other CGD related costs. These expenses must be referred to the charity through the nursing service:
- Travel costs to hospital appointments
- Financial support for parents to stay near their child/children when they are in hospital going through a BMT or when their child/children have been admitted to hospital for a long time.
- Financial support for CGD affected adults who have lost some earnings while going through a BMT or have been admitted for a long hospital stay.
- Food vouchers for families and patients while in hospital
- Little treats for children with CGD while they are in hospital.
- Equipment to help children continue their schoolwork while being in hospital and receiving treatment.
If you would like to apply to the CGD Society regarding the payment of any of the above expenses, please email us at hello@cgdsociety.org and we will get back to you.
The CGD Society would like to offer support to patients and families affected by CGD who are facing financial and personal hardship. If the charity can help you and your family through a difficult period or replace essential equipment or furniture in your home, our specialist nurse can assist you with a claim.
Unfortunately, the charity is unable to deal directly with personal requests for expenses as all requests are subject to professional assessment.
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William’s Story
One young man who has benefitted from our Family Support Fund is William. William was diagnosed with CGD and went through a Bone Marrow Transplant.
Unfortunately, after the procedure, William began to develop muscle weakness in his legs and now cannot manage to walk far without getting tired. Although William’s care is under a physio, he did not qualify for a specialised pushchair via the NHS. Due to William being 5 years old, pushchairs are much more expensive than for babies or toddlers.
CGDS’ Support Fund enabled William’s family to purchase the specialised pushchair, and he is pictured below enjoying the Christmas lights last year, which Mum Sophie says he would not have been able to do otherwise.