Rare Disease Day is a day of global solidarity, marked each year around the world on the last day of February (the rarest day of the year) to raise awareness and to advocate for equity for rare disorders.

There are more than 7,000 different types of rare disorders, with more being discovered each day.

There are an estimated 300 million people living with a rare disorder worldwide.

72% of rare disorders are genetic in origin and thus are present throughout a person's life even if the symptoms do not immediately appear.

Approximately 50% of the people affected by rare disorders are children.

95% of rare disorders have no approved drug treatments.

Approximately 50% of rare disorders do not have a disease specific foundation supporting or researching their rare disorder.

Source: Rare Diseases International

What is lifelike living with a rare disorder in Aotearoa New Zealand?

Our biennial Voice of Rare Disorders surveys, on behalf of patient organisations, is currently the only comprehensive data collected to understand the impact that living with a rare disorder has on different areas of life in New Zealand, as well as where the needs are and what barriers exist that prevent people from accessing the treatment and care they need for a decent quality of life.

The most recent RDNZ survey in November 2021, had 718 responses, making it the largest-ever survey of patient-reported outcomes for people with rare disorders in New Zealand.

Anyone living with a rare disorder in New Zealand was strongly encouraged to take part, as well their whānau and carers.

The results paint a picture similar to the 2019 survey, of isolation, lack of timely diagnosis, poor treatment access, lack of coordinated care, significant carer impact and for many, being lost in the system.

More than ever, the results clarify the need for a comprehensive plan to deliver sustainable improvements in health outcomes for the rare disorder community.

Key findings from the latest survey:

· Over half took longer than one year to get a diagnosis, and for one in five, it took over 10 years.

· For 60-75% of people, their disorder makes a number of everyday activities difficult.

· High utilisation of healthcare services, with 81-87% having seen a specialist or GP in the 70 days prior to survey, and 58% feeling these services have been impacted by COVID-19.

· Many have been in hospital over the last 12 months. One in three were in hospital for an average of 13 days, and one in 17 were in ICU for an average of 7 days.

· There were few accessible, effective modern medicines available for most people, with most being used to relieve pain and inflammation.

· The majority felt that communication and information exchange between different service providers was poor and that professionals are poorly prepared to support them.

· 70% had a decrease in income and limited employment options due to their disorder.

· 57% have experienced increased tension between family members, and 69% experienced isolation from family and friends, amplified by or caused by their rare disorder.

· One in three often felt unhappy and depressed and felt they could not overcome their problems.

We need your Help:

1. IDFNZ represents over 450 rare immune deficiency disorders and over 100 rare liver disease disorders.

2. By completing the RDNZ 2023 Survey, IDFNZ patient members can add their voice to this survey and help us to lobby to improve outcomes for our membership.

3. Join in with our online campaign promoting Rare Disease Day. We aim to raise awareness across New Zealand and to engage with all cultural groups. Pleas ‘like’ and ‘share’ our posts to get our messaging across.

4. Help us to Celebrate Rare Disorders month 2024 – participate in our planned events, RSVP completing the invitation forms in this newsletter, or email office@idfnz.org.nz to register your interest.

IDFNZ Rare Disease Celebrations 2024: #RareDisordersMonth

Sunday February 25th Christchurch Orana Park picnic & fun day

Sunday February 25th - Wellington Movie event

Sunday March 3rd – Auckland Parakai Springs picnic & fun day