Vicki

IPOPI

IPOPI is the international patient organization for immune deficiency. I was most fortunate to represent IDFNZ at the IPOPI conference in October 2024.

Attending IPOPI is an amazing experience; even though I have represented NZ previously, I understand a little more about how IPOPI works. NZ was one of the foundation members of IPOPI and was strongly involved with its inception over 30 years ago. What started as a few national member organizations (NMOs) has grown to an amazing number of members today – at each conference, several new organizations from countries around the world are always admitted for the first time. To be in a room with others who understand the difficulties that patients face, to network for ideas for each organization, and to be able to bring back ideas to New Zealand is amazing, to say the least. A noticeable difference this time was for non-English speaking countries/delegates – at the tables, they were able to scan a QR code and have a translation of the talks. It is also a humbling experience as a number of the new patient member organizations have extraordinarily little support and resources to begin with. I appreciate how exceptionally lucky we are in New Zealand with our experienced Board, our expert medical panel, and the established treatment options freely available to our members through our public health service. We have also been fortunate to have SCID testing included in newborn testing since 2017.

It was also sobering to hear another NMO member say, “The night before I left for IPOPI, I had to go to the bomb shelter in our apartment – we only had two minutes to get there – before 32 missiles were coming our way”. This was a fellow member from Israel. This lady is trying hard to get a new organization up and running with extraordinarily little funds and against a background of war. I have the utmost respect for her and many other NMO’s working against very trying conditions to provide for their patients.

The conference was packed full of information, with long days and interesting talks and so much to take in. I attended both IPOPI and ESID talks and was able to mix with PID patient representatives, doctors, and nurses from all over the world.

I cannot name all the topics covered here, but a big part of this year was acknowledging AI and how organizations/doctors can best use it to assist in each area of work. The other controversial topic was to include SID in the scope of activities for the PID community. This received very mixed reactions in that several PID members felt this took away from the rarity of our conditions. However, the IPOPI Board did not take the decision lightly, and it came about after significant consultation with physicians, NMOs, SID patients, industry partners, and other patient organizations. There is a sizeable portion of SIDs diagnosed as having PID also, and there were commonalities between PID and some specific forms of SID.

It is extremely difficult to break down the conference, but I am happy to discuss more with anyone interested.

CIRCA

This is extremely exciting; I have been elected as a Board member on the CIRCA board. 

The Clinical Immunogenomics Research Consortium of Australasia (CIRCA) is an Australian/ New Zealand-wide research collaboration that brings together clinicians and scientists with a range of specializations and abilities from across the region to identify the causes of rare immune diseases. Established in 2015, CIRCA is committed to improving the care of patients with rare immune diseases through research-driven, evidence-based Medicine. While the group started with a focus on whole genome sequencing, CIRCA has now used a range of multi-omic technologies to diagnose and accelerate our understanding of these conditions and to facilitate the discovery of targeted therapies. The group has also moved increasingly towards improving the management of these diseases locally within the Aus/NZ setting. I feel privileged to serve alongside such amazing doctors/researchers/scientists with a common goal. I will keep the IDFNZ Board and patients updated where I can. I am representing the needs of New Zealand PID patients, researchers, and doctors, and I am happy to liaise directly with individual patients as required. I will also have the support of our medical panel, particularly Annaliese Blincoe from the IDFNZ Board.

Thank you for taking the time to read my update. Please be assured that I will always do my best to represent you, our patients, and our organization, upskilling as required to give my best to each position/role I am fortunate enough to hold.

I work part-time as a legal executive, but I will always try to respond if you email me via the IDFNZ office. I will endeavour to come back to you as soon as possible. In my new role with CIRCA, I will likely be looking to talk more with individual members.