Rare Disease Day takes place on the last day of February around the world and is an annual celebration and fundraiser for those Rare Gems in our community. Here in New Zealand we are lucky to be the first to kick off the celebrations worldwide.
Rare Disease Day 2016 is an important opportunity to raise funds for those support groups in the community whose hard work often goes unnoticed. Supporters all around the country will be organising fundraising events. If you are keen to get involved, check the NZ Rare Disease Day Facebook page for details of events that you can contribute to. Or you can organise you own event – and don’t forget to share your event with us so we can list it on this website. There are spot prizes up for grabs for those that share their event.
Find out how other countries are celebrating their Rare Gems:
Why is Rare Disease Day important?
- There are more than 7000 different rare diseases affecting 8 percent of the population. If evenly spread, 1 in 12 households would be affected by a rare disease.
- A day focused on rare diseases can bring hope and information to people living with rare diseases, their carers and their families.
- Rare disease patients are often the orphan of the health system, sometimes without a diagnosis, without effective treatment or without research.
- Diagnosis, treatment and cure of rare diseases are major public health problems for society.
- Rare diseases are often life-threatening with a high level of complexity. Patients and their families are often isolated and vulnerable. Life expectancy for many rare disease patients is significantly reduced.
- Rare disease patients often have difficulty accessing appropriate health and disability services - they are too often put in the ‘too hard’ box.
- Holding a national awareness day is a great way to inform and remind people that rare diseases need attention in research and health services.
Facts on rare diseases
Although rare and genetic diseases, and many times the symptoms, are uncommon to most doctors, rare diseases as a whole represent a large medical challenge. Combine this with the lack of financial or market incentives to treat or cure rare diseases, and you have a serious public health problem.
Did you know that:-
- There are approximately 7000 different types of rare diseases and disorders, with more being discovered each day.
- If all the people with rare diseases lived in one country, it would be the world's 3rd most populous country.
- In the United States, a condition is considered "rare" if it affects fewer than 200,000 people, in the United Kingdom a disease is considered rare if it affects fewer than 50,000 citizens per disease.
- 80% of rare diseases 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 diseases are children.
- 30% of children with a rare disease will not live to see their 5th Birthday.
- According to the Kakkis EveryLife Foundation, 95% of rare disease have not one single approved drug treatment.
- 350 million people globally are fighting rare diseases.
- Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
History of Rare Disease Day
Rare Disease Day began in Europe on 29 February 2008. Originally, the intention was to celebrate the day every four years on Leap Day, but the momentum and enthusiasm for the day grew until it became an annual celebration – with events taking place around the globe.
In February 2010, New Zealand got involved, thanks to the initiative shown by the DEBRA New Zealand support group, who carried the flag for all rare disease groups in New Zealand. DEBRA arranged for the Vodafone Warriors to back the cause who committed to supporting rare diseases in New Zealand.
In February 2011, this website was launched and a series of fundraisers were organised by various support groups throughout the rare disease community. However, the second major Christchurch earthquake that occurred six days before the event led to the cancellation of most of the events, with everyone’s fundraising efforts channelled to the recovery effort instead.
As the host of Rare Disease Day in New Zealand, NZORD is keen to keep the momentum going each year – raising more awareness and funding for support groups throughout New Zealand.
Rare Gems – Family stories
Would you like to share your story?
NZORD is collecting stories for this website and for the NZORD site from families and rare disease patients to help other patients and families with their own journey.
Five families have shared their stories with NZORD over the years:
Dying girl's life celebrated every week
Four-year-old Katie Archer is given a birthday party every weekend because her family has a lifetime of birthdays to make up for. Parents Brett and Lisa are coming to terms with a diagnosis of late infantile Batten disease - an extremely rare degenerative neurological condition which affects only one other child in New Zealand, that the Archer’s know of.
One Family's Journey with Mucolipidosis type 3
In 1987, doctors gave Nelson couple Jenny and Paul Noble a diagnosis of a rare disease, Mucolipidosis type 3, in two of their three children. They had a choice of accepting the advice to just get on with their lives as best they could, or searching for information and treatments for their children.
Saving Lisa - One woman's fight against LAM
Even on the blurry video screen, Bronwyn Gray could see her daughter moving through the arrival hall at Auckland International Airport unusually slowly. Leaning slightly on the trolley with its stack of suitcases, yellow duty-free bags and bottles of French merlot, the young woman with the bouncy chestnut curls and wide smile was inching forward.
Family funds research into "lost girls"
Kristen Deane was born with the world at her feet. The only child of New Zealand's "Mr Business" Roderick Deane and his artistic wife Gillian, the potential which lay ahead as her life unfolded would have been boundless. But at about 18-months-old, when her peers were getting the hang of building with blocks, she began to drop them. The little girl started to wake, screaming, in the night.
Dave Hill's experience with Superficial Siderosis
From Dave Hill's experience with Superficial Siderosis, and his desire to know more and to help others, came an international network and a mine of information.
If you’d like to share your story, please contact email@example.com.
You can find more families’ stories via the links in our support group directory.