Upcoming Event- RARE DISEASE DAY!


Rare Disease Day 28th February


Rare Disease Day takes place on the last day of February each year. 

IDFNZ KIDS Foundation is a patient support group that represents the many New Zealand PID and Liver disease patients affected by Rare diseases of the immune system and liver. There are well over 300 immune deficiency diseases falling into this classification alone.

Our purpose in supporting Rare Disease Day is to raise awareness about these and the 377,076 other  New Zealand individuals living with other types of rare diseases, that impact on patients' lives .

Although individually “Rare”, collectively these patients amount to a significant portion of our population; thousands of families across New Zealand live with the challenges of rare diseases affecting a loved one. One in 20 individuals are affected by a Rare disease at some point in their lives.

Despite this, there is no cure for the majority of rare diseases and many go un-diagnosed. Rare Disease Day improves knowledge among the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

The only way we can truly show our support is to really "Put our hands up on Rare Disease Day" and show off a campaign we can be proud of!!

We are asking ALL members to join us to mark Rare Disease day by raising your hands and showing you are rare and that you care about this special part of our New Zealand Community.

 LIKE and/or SHARE our FACEBOOK PAGE!!  Link here: https://www.facebook.com/KidsFoundationNZ/posts/963264263711483

Join our facebook photo challenge to have some fun and let everyone know you are passionate about this cause. https://www.facebook.com/pg/IDFNZKidsFoundation

Creating awareness through a visual medium not only builds knowledge, but is a fun and creative way to promote these diseases to help and educate others!

Auckland Members – Look out for the RDD information and displays at Auckland hospital.

 We also encourage Auckland members to register for the NZORD one-day symposium for Rare Disease Day: Thursday 22nd February at the Ernest & Marion Davis Lecture Hall, Auckland City Hospital. Details at https://www.nzord.org.nz/rdd-symposium-2018

Wellington members - Local PID members are volunteering their time to host an information stand at Wellington Hospital on Wednesday 28th February. Drop in and encourage them as they promote the “7 PID warning signs” and advertise their regular group meetings.