Change is in the air, and as Chief Executive of Rare Disorders NZ it has been my privilege over the past five years to support increased awareness, understanding and equity for all persons impacted by a rare condition. With a strong team in place and a clear map for the future, now is the right time for me to step into a consultancy role with RDNZ to focus on key areas, while allowing a new CE to steer the ship. I will be looking to deliver meaningful change in New Zealand and abroad by contracting to private industry, NGOs and government agencies, while continuing to support RDNZ through advocacy and international channels.
I offer whole-hearted appreciation for each and every one from the rare community who step forward to share their stories or speak their truth, and I applaud their passion, dedication and effort. It is only ever the power of a unified voice that brings about change!
RDNZ have focused on amplifying this voice, and recently I have met with the Office of the Chief Clinical Officers, who advise the Minister of Health, and connected with the Mental Health Commission about the importance of inclusion of carers and whānau for respite and practical mental health support.
I am thrilled to be preparing for our third and largest ever Rare Beer Event which will be on June 3rd, and excited to deliver a workshop at the GP conference on 'Awareness of Rare Disorders'; this offers the amazing opportunity to educate our clinical professionals about the value of being informed and aware about rare conditions. Such awareness can assist with a timely diagnosis and more supportive care for rare conditions, which is why it is a central theme to most National Frameworks in other countries.
Voice of Rare Disorders White Paper launched
To mark Rare Disease Day on 28 February, we launched the Voice of Rare Disorders white paper, based on the results of the Voice of Rare Disorders Survey from November 2021.
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.
Some of the key findings:
Over half took longer than one year to get a diagnosis, and for one in five, it took over 10 years.
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 seven days.
There were few accessible, effective modern medicines available for the majority of 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.
One in three often felt unhappy and depressed and felt they could not overcome their problems.
In GP clinics and medical centres nationwide over the two weeks on either side of Rare Disease Day our latest awareness raising video was played, reaching an estimated 380,000 people. You can watch the video here.
Rare Disorders NZ on Nine to Noon
Lisa Foster, Rare Disorders NZ CE, talked to Kathryn Ryan about the alarming results from our survey and how the NZ health system is failing those with rare disorders.
Our Chair James McGoram was moved by the powerful testimonies from people with Cystic Fibrosis at the handover of Carmen Shanks’ Trikfata petition in Auckland on 31 March, calling on the Government to urgently fund the life-saving drug. Today FM’s Rachel Smalley covered the story throughout the week that followed, interviewing the Minister of Health, Pharmac’s Director of Operations, Australian Minister of Health, Greg Hunt, and RDNZ’s own Chair James McGoram regarding the statement we put out expressing frustration over Minister Little’s comments around Pharmac’s budget constraints.
We are very excited to announce the new date for the 2022 Rare Beer Challenge fundraiser for RDNZ is Friday 3rd June! Hosted by our lovely friends at Fortune Favours, this event is a fun evening to get together, try some unusual brews and support a good cause! We look forward to seeing you there.
Rare Disorder NZ’s CE Lisa Foster will be attending the next Highest Needs Review Hui this month to represent those with a rare disorder and make sure our voice is included in this review. We will keep you updated on progress and further opportunities to participate.
Mental Health and Wellbeing Submission
RDNZ made a submission to the Mental Health and Wellbeing Commission on the draft monitoring framework He Ara Āwhina (Pathways to Support) to monitor the mental health and addiction system (including services) from 2023. Currently, there is no recognition of people with rare disorders as a collective in New Zealand and this needs to change. You can read our submission here.
Roadside safety law could affect those with a rare disorder
There is concern in the rare disorder community around the new roadside testing law, and we understand this could be an issue for many with a rare disorder. If you, or anyone you know, is interested in this issue, please contact Kelly who is forming a group for people who are concerned about this.
Rare Disease International, in partnership with EURORDIS Rare Barometer Survey project has launched the Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease to identify factors that influence the process of obtaining a diagnosis and obstacles along the journey.
This survey is open to people living with a rare disease and their family members from any country in the world. It is translated in 26 languages.
Rare Disorders NZ will be given the New Zealand outcomes from this survey so please participate and let your voice be heard!
It should take no more than 20 minutes to complete and closes on 15 June 2022. You can access the online survey here.
Rare Disorder support groups
The list of support groups in our collective continues to grow, making our collective stronger and enabling us to connect more people to the right groups.
Please let us know if you hear of support groups that may not know about us so we can connect with them. We want to make sure we can connect as many people as possible to a group for their condition if it exists. Thanks for your help!
New private Māori Facebook group
We have created a Facebook page for Māori whānau with rare disorders to join. Please share it far and wide so that it can be accessed by those whānau who would benefit from it.
The kaupapa will be evolving as we get a better understanding of where the needs lie. For any enquires please get in touch with our Māori Engagement Officer Julian.
The team at Rare Disorders NZ
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