In the geographically small island nation of New Zealand, there are estimated to be as many as 300,000 people who live with various rare diseases or disorders. Unfortunately, like in the vast majority of countries on Earth, they often struggle to gain access to the treatment and expertise that they desperately need. The process of getting an accurate diagnosis alone is a major challenge for patients even in the best of circumstances.
The National Rare Disorder Framework
In an attempt to address the unmet needs of rare disease patients in New Zealand, patient advocate and mother Sue Haldane alongside the organization Rare Disorders NZ has submitted a Parliamentary Petition that is calling for the implementation of a National Rare Disorder Framework for the country. This framework would essentially be a system that takes into the account the specific needs of patients with rare diseases. Healthcare systems are simply not designed with the rare disease patient in mind. This framework would represent a major step in incorporating the needs of rare disease patients as part of the current medical system.
The Importance of International Collaboration
Working together on the international level has been a central factor in improving the lives of rare disease patients around the world, and Parliamentary Petitions in New Zealand can be signed by anyone in the world. Right now, the petition stands with a little over 800 signatures. It will remain open to signatures for 76 more days with a deadline of September 1st, 2020.
Are you interested in helping out the New Zealand rare disease community? Click here to add your name to the petition.
Are you interested in learning more about Rare Disorders NZ? Click here to visit their website and learn more about the organization’s goals and activities.
While there is no guarantee that this petition is going to lead to the adaptation of the framework, they can be a huge step in right direction and can help the international rare disease community get organized. International collaboration in rare diseases is essential and patients should be ready to help each other out no matter what country they are from or what language they speak. Adding your signature could make a real difference.