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Useful Links

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More information about primary and secondary immunodeficiency, other organisations plus patient and carer support resources.

This list has been compiled to give you more information about primary and secondary immunodeficiency plus related organisations and services. These links are suitable for patients, carers and healthcare professionals.

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More Information about Immunodeficiency – Australia

Discover more information about primary immunodeficiencies, immunoglobulin replacement therapy, SCIg therapy and infusion.

[/et_pb_blurb][/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”ASCIA’s National Immunodeficiency Strategy” url=”https://www.nationalimmunodeficiencystrategy.org.au/” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.nationalimmunodeficiencystrategy.org.au/” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”]

The ASCIA National Immunodeficiency Strategy has been developed for Australia and New Zealand. IDFA also participated in the consultation process of the Strategy.

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Catherine talks about her diagnosis with Common Variable Immunodeficiency (CVID) and experience with intravenous immunoglobulin (IVIg) treatment which allows her to live a healthy and active life.

[Video courtesy of NPS Medicinewise]

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Other Primary Immunodeficiency Organisations – Overseas

Related Information Resources and Organisations – Australia

[/et_pb_text][/et_pb_column][/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”Autoimmune Resource & Research Centre (ARRC)” url=”https://www.autoimmune.org.au/” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.autoimmune.org.au/” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”Allergy & Anaphylaxis Australia” url=”https://allergyfacts.org.au/” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://allergyfacts.org.au/” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”Allergy and Immunology Foundation of Australasia (AIFA)” url=”https://www.allergyimmunology.org.au/” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.allergyimmunology.org.au/” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”HAE Australasia (Australian patient organisation for Hereditary Angioedema)” url=”https://haeaustralasia.org.au/” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://haeaustralasia.org.au/” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”Self-Advocacy Information and Resources” url=”https://www.hconc.org.au/individual-advocacy/individual-advocacy-information-resources/” url_new_window=”on” _builder_version=”4.17.0″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.hconc.org.au/individual-advocacy/individual-advocacy-information-resources/” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][/et_pb_column][/et_pb_row][/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.16″ _module_preset=”default” custom_margin=”||3px|||” custom_padding=”3px|||||” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” custom_padding=”70px|||||” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.22.1″ _module_preset=”default” text_text_color=”#FFFFFF” text_font_size=”16px” text_line_height=”2em” header_text_color=”#FFFFFF” header_2_font=”Montserrat|300|||||||” header_2_text_color=”#f59164″ header_3_font=”Montserrat||||||||” header_3_text_color=”#FFFFFF” header_3_line_height=”1.4em” background_color=”gcid-45ce0fea-49b0-4829-b257-5090bf0d4cfd” custom_padding=”15px||4px||false|true” border_radii=”on|20px|20px|20px|20px” global_colors_info=”{%22gcid-45ce0fea-49b0-4829-b257-5090bf0d4cfd%22:%91%22background_color%22%93}”]

Genetics Information Resources

Discover some useful fact sheets about genetic conditions, testing and counselling

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Rare Disease Organisations

Mental Health Support

If you or someone you know are in crisis please phone Lifeline Australia – 13 11 14

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National Disability Insurance Scheme (NDIS)

[/et_pb_text][/et_pb_column][/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”How the NDIS Works ” url=”https://www.ndis.gov.au/understanding/how-ndis-works” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.ndis.gov.au/understanding/how-ndis-works” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”What is the NDIS and some NDIS key words ” url=”https://www.ndis.gov.au/understanding/what-ndis” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.ndis.gov.au/understanding/what-ndis” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”What type of NDIS supports are there? What is funded and what isn’t funded?” url=”https://www.ndis.gov.au/understanding/supports-funded-ndis” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.ndis.gov.au/understanding/supports-funded-ndis” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”NDIS Co-ordinators” url=”https://www.ndis.gov.au/participants/using-your-plan/who-can-help-start-your-plan” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.ndis.gov.au/participants/using-your-plan/who-can-help-start-your-plan” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”Planning Operational Guideline – The participant’s statement of goals and aspirations” url=”https://www.ndis.gov.au/about-us/operational-guidelines/planning-operational-guideline/planning-operational-guideline-participants-statement-goals-and-aspirations” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.ndis.gov.au/about-us/operational-guidelines/planning-operational-guideline/planning-operational-guideline-participants-statement-goals-and-aspirations” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][/et_pb_column][/et_pb_row][/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.16″ _module_preset=”default” custom_padding=”3px|||||” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” custom_padding=”71px|||||” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.22.1″ _module_preset=”default” text_text_color=”#FFFFFF” text_font_size=”16px” text_line_height=”2em” header_text_color=”#FFFFFF” header_2_font=”Montserrat|300|||||||” header_2_text_color=”#f59164″ header_3_font=”Montserrat||||||||” header_3_text_color=”#FFFFFF” header_3_line_height=”1.4em” background_color=”gcid-45ce0fea-49b0-4829-b257-5090bf0d4cfd” custom_padding=”15px||4px||false|true” border_radii=”on|20px|20px|20px|20px” global_colors_info=”{%22gcid-45ce0fea-49b0-4829-b257-5090bf0d4cfd%22:%91%22background_color%22%93}”]

Information for Carers

Other Government Services

[/et_pb_text][/et_pb_column][/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”The Department of Health – Chronic Disease Management Patient Information” url=”https://www1.health.gov.au/internet/main/publishing.nsf/Content/mbsprimarycare-chronicdisease-pdf-infosheet” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www1.health.gov.au/internet/main/publishing.nsf/Content/mbsprimarycare-chronicdisease-pdf-infosheet” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”Services Australia – Medicare Safety Nets” url=”https://www.servicesaustralia.gov.au/individuals/services/medicare/medicare-safety-nets” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.servicesaustralia.gov.au/individuals/services/medicare/medicare-safety-nets” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”Services Australia – When you spend a lot on PBS medicines” url=”https://www.servicesaustralia.gov.au/individuals/services/medicare/pharmaceutical-benefits-scheme/when-you-spend-lot-pbs-medicines” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.servicesaustralia.gov.au/individuals/services/medicare/pharmaceutical-benefits-scheme/when-you-spend-lot-pbs-medicines” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_blurb title=”Services Australia – Essential Medical Equipment Payment” url=”https://www.servicesaustralia.gov.au/individuals/services/centrelink/essential-medical-equipment-payment” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat||||||||” header_text_color=”#000000″ header_line_height=”1.4em” background_color=”#ffffff” custom_padding=”20px|20px|20px|20px|true|true” link_option_url=”https://www.servicesaustralia.gov.au/individuals/services/centrelink/essential-medical-equipment-payment” link_option_url_new_window=”on” border_radii=”on|6px|6px|6px|6px” border_radii_image=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_spread=”-2px” box_shadow_color=”rgba(0,185,215,0.19)” global_colors_info=”{}”][/et_pb_blurb][/et_pb_column][/et_pb_row][et_pb_row column_structure=”1_2,1_2″ 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global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” custom_padding=”71px|||||” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.22.1″ _module_preset=”default” text_text_color=”#FFFFFF” text_font_size=”16px” text_line_height=”2em” header_text_color=”#FFFFFF” header_2_font=”Montserrat|300|||||||” header_2_text_color=”#f59164″ header_3_font=”Montserrat||||||||” header_3_text_color=”#FFFFFF” header_3_line_height=”1.4em” background_color=”gcid-45ce0fea-49b0-4829-b257-5090bf0d4cfd” custom_padding=”15px|10px|4px|10px|false|true” border_radii=”on|20px|20px|20px|20px” global_colors_info=”{%22gcid-45ce0fea-49b0-4829-b257-5090bf0d4cfd%22:%91%22background_color%22%93}”]

Encourage Others to Donate Plasma

Legal and Financial Support

[/et_pb_text][/et_pb_column][/et_pb_row][et_pb_row _builder_version=”4.16″ _module_preset=”default” custom_padding=”25px||52px|||” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_accordion closed_toggle_background_color=”#e8f5f5″ icon_color=”#606060″ use_icon_font_size=”on” icon_font_size=”24px” module_class=”faq-section” _builder_version=”4.24.2″ _module_preset=”default” toggle_text_color=”#000000″ toggle_font=”Montserrat|300|||||||” toggle_font_size=”20px” toggle_line_height=”1.7em” closed_toggle_font=”Montserrat||||||||” body_font=”Montserrat|300|||||||” body_font_size=”16px” border_radii=”on|3px|3px|3px|3px” border_color_all=”#e8f5f5″ global_colors_info=”{}”][et_pb_accordion_item title=”NDIS – Eligibility and Application Process ” open=”on” _builder_version=”4.17.0″ _module_preset=”default” global_colors_info=”{}”]

Eligibility for financial support through NDIS needs to be determined on a case-by-case basis by the relevant authorities. Our Links page has a list of useful website links.

For information into what financial support you could be eligible for as well as assistance in preparing NDIS applications, we recommend contacting an NDIS representative in your local area:

Offices and contacts in your area | NDIS

[/et_pb_accordion_item][et_pb_accordion_item title=” Understanding Your Rights At Work ” _builder_version=”4.24.2″ _module_preset=”default” global_colors_info=”{}” open=”off”]

The following links may be of assistance when it comes to understanding your legal rights at work:

Employment conditions – Fair Work Ombudsman

Flexibility in the workplace – Fair Work Ombudsman

Protections at work – Fair Work Ombudsman

Bullying, sexual harassment & discrimination at work – Fair Work Ombudsman

[/et_pb_accordion_item][et_pb_accordion_item title=”Medicare and Health Insurance Cover” _builder_version=”4.17.0″ _module_preset=”default” global_colors_info=”{}” open=”off”]

What is and isn’t covered under the Australian Medicare scheme is updated regularly. Individual health care needs can also differ greatly from person to person. The following links may provide you with some further understanding as to what is and isn’t covered under the public and private healthcare space:

What’s covered by Medicare – Medicare – Services Australia

Search – Services Australia

Much like Medicare, private health insurance company policies and packages are updated regularly and are also quite diverse in their coverage. The package type you choose and what is covered within is very much a personal choice and sometimes based on costs. The private health insurance companies will normally talk you through what each package looks like and provide guidance as to what they recommend would be the better choice for your family circumstances.

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