September 25, 2015

About IDFA

I am Christine Jeffery, the Executive Officer of the Immune Deficiencies Foundation Australia (IDFA). My personal story is that my 25 year old daughter has complex immune and autoimmune issues.

Christine Jeffery, Executive Officer of IDFA

IDFA was formed in 2005 by IDF New Zealand and an immunologist, nurse and a few patients in Australia.

Friends
IDFA are great friends with IDFNZ – we meet at the ASCIA (Australasian Society for Clinical Immunology & Allergy) convention and share resources and information. It is good to have other NMO friends. They help with ideas and advice and patients love to meet other patients from across the sea!

IDFA Board
I joined the IDFA Board in 2011 and became the Executive Officer in 2012. We have 9 members on our Board of Directors including a pediatric and adult immunologist, two accountants, and a range of other professionals with degrees in business, accounting and governance. Included in the Board are 3 PID patients and 2 PID parents.

IPOPI
I was fortunate enough to attend IPOPI in Florence in 2012 and was co-opted to the IPOPI Board. Last year at the AGM in Prague I was elected as a Board member and voted treasurer. It is a wonderful privilege being part of the IPOPI team. IPOPI have so many new NMOs joining and have resources and booklets to help. IPOPI is making a big difference throughout the world in areas such as newborn screening for SCID and access to immunoglobulin supply. IPOPI is now helping establish NMOs in Asia which is very exciting.

Our organisation
IDFA
turned 10 this year and it has been a very busy year. Our membership has grown to over 1500! We have 900 patients and our other members include carers and health care professionals.

Australia
We live in a very large country and it is difficult to keep our PID community close. It is very important that our members feel part of our IDFA family so in everything we do, our motto for our members is IDFA = I Don’t Feel Alone.

Staff I am the only full time staff member. I have degrees in Business, Education and Training. My 2 wonderful staff (Chloe and Emma) work part time and have degrees in Business, Social Science and Health Science. We work from my home in the Blue Mountains NSW and with an ever growing organisation, we are busy, busy, busy!

Emma is our newest member of staff. She is our Health Promotion & Communications Officer. Emma adds new members to our database, sends out patient resource packs, posts daily on Instagram and Facebook, seeks grants, liaisons with government agencies and private health funds and manages our resources.

Chloe is our patient support officer. She contacts all our new members when they join, assists members with practical advice, coping skills, emotional support, organises teleconferences, runs the YAMS (young adult members) group, mediates our Facebook groups and has written a PID Pamphlet on Fatigue which will be published this year.

Emma and Chloe

What has happened this year?

Conferences ASCIA, IDF Conference, NBA Symposium, Genetic leadership group

Workshops mental health, advocacy

Dinners fundraising gala ball, genetic alliance parliament house

Meetings patient meetings Adelaide & Melbourne, IDFNZ meeting Adelaide, IDF meeting New Orleans

Changes in blood supply arrangements – CSL (IntragamP & Evogam) stay, added Privigen and Hizentra, Grifols & Flebogamma 5% & 10% (new), Baxalta (Kiovig) and  Octapharma (Octagam & Gammanorm) ceased.

What’s coming next year?

    • Newborn Screening campaign for SCID with ASCIA (Australasian Society of Clinical Immunology & Allergy)

 

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