Resources & Advocacy

Advocacy

Support newborn screening for Severe Combined Immune Deficiency (SCID)

NDIS support letter for Primary Immunodeficiencies.  IDFA has compiled a form to use as a supporting document to accompany NDIS applications for Primary Immunodeficiencies. Just download, print and complete. NDIS Support letter Primary Immunodeficiency  Contact us on 1800 100 198 if you need assistance.

IDFA Advocacy and member services

PID Resources

IDF Patient and Family Handbook – Australasian Edition

Brochures and Booklets about PID click to order

Mental Health Resources

World PI Week Resources

What are PIDs? IDFA publication about PIDs. PDF format, 251 KB.

Organs Affected By PID – IDFA publication. PDF format, 306 KB.

IDFA Products

PID Awareness Pin $10 – Tax deductibleOrder here

Hoodies, polos, TShirts, banner pens & wristbands – IDFA Products – order form

 Travelling with Primary Immunodeficiency

  1. If you are travelling into or out of Australia and taking immunoglobulin (plasma derived products are regulated as presciption medicines), check travelling with medicines and medical devices on the Therapeutic Goods Association (TGA) website (watch the video).
  2. Check the medicine is allowed in the country you are travelling to. Do this by contacting their consulate or embassy.
  3. Some medicines that are legally available in Australia are not allowed in other countries
  4. Some medicines are legally allowed in other countries but need a permit
  5. Some medicines need customs clearance – check with customs in each country stop over prior to flying
  6. Your medication may be illegal at your destination (you may need to ask your doctor about alternatives)
  7. Restrictions also apply to complementary medicines
  8. Carry a letter from your doctor
  9. Keep all medication in original packaging
  10. Check with your immunologist for arrangements for appointments and infusions in other countries well before leaving Australia or departing your country

Australians needing IVIg overseas

Please consult with your immunologist and refer to the National Blood Authority website well before you travel.

References:

Member Surveys

IDFA is seeking feedback from members with 2 short surveys. If you have time, we would appreciate you completing this.

Member survey

Antibiotics and other medications member survey

Comorbidities (other illnesses) member survey

IDFA Newsletters

Newsletters

Orphanews

Position Statements

IDFA SCID Newborn Screening Position Statement

IDFA Position Statement Access and Choice of Ig products

ASCIA SCIg position statement

ASCIA Hereditary Angioedema Position Paper and Action Plan

Allied Health

Allied healthcare

Research

Research studies, Clinical trials, Journals and Papers

Membership

Join here

Patient recommendations

Effect of yoga therapy on lung functions in respiratory disorder subjects

 National Plan for Rare Diseases

Rare Voices Australia Communique

 

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