Carer Support

If you are the carer of someone living with immunodeficiency IDFA can support you too

Carers are a family of people or a community who provide support to others. It is important to recognise you face unique challenges in your role as a carer. After all, you may also be attending multiple medical appointments, keeping track of medication and treatments and feeling the strain of emotional and financial burdens.

How can IDFA support you as a carer?

Carers are an important part of the IDFA family, we can connect you with a community who understands the obstacles faced by those caring for someone with complex medical needs.

No matter where you live in Australia, we can provide a community and the extra support you’re looking for through our membership program. When you become an IDFA member you have access to a wide range of supports and services also available to our patients.

Social support – bringing you together with others affected by immunodeficiency

• Connect with the IDFA community in our private Facebook groups, including a carers only group
• Linking – IDFA can connect you with other carers living with patients who have similar primary or secondary immunodeficiency experience
• Member get-togethers supported by IDFA.

Emotional support – giving you opportunities to share your experience with others

• Practical advice on living with immunodeficiency
• Peer support programs.

Educational support – learn more about primary and secondary immunodeficiency

• Resources (e-resources and hard copy)
• Carer’s Group Support
• Educational programs
• Meetings and conferences (in-person and online)
• Webinars
• Advice on accessing NDIS and Centrelink services
• Guidance from our Medical Advisory Committee.

Advocacy support – encouraging self-advocacy and advocating for you on key issues

• Through social media you can advocate for yourself by sharing our news, updates and educational graphics.
• IDFA advocates on your behalf influencing policy makers and government on key issues e.g. SCID newborn screening.

Awareness support – raising awareness in the community

• Community education programs
• Awareness campaigns throughout the year e.g. World PI Week, National Blood Donor Week, International Plasma Awareness Week
• Raising awareness in the medical and broader community by attending and speaking at special events encouraging acceptance of immunodeficiencies.

Note: Both carer and patient must become IDFA members to have full access to our services.