Promoting awareness of rare disorders
Rare Disorders NZ hosted a stand at the New Zealand Respiratory Conference at Te Papa last week.
Our Chief Executive Lisa Foster and Relationship Manager Kim MCGuinness attended the conference on behalf of the 34 rare conditions in our collective with respiratory issues, as well as promoting our Parliamentary Petition for a National Rare Disorder Framework. Examples of rare disorders that have respiratory issues include Ehlers-Danlos Syndromes, Cystic Fibrosis and some chromosome disorders.
Lisa and Kim spoke to a wide range of healthcare professionals, including specialists, nurses and physiotherapists who were keen to learn more about rare health conditions and the resources available to help their patients.
Our support groups were grateful for the opportunity to be represented, with one member of our collective commenting “Thank you so much! This makes my heart sing to see you educating our medical community. The more aware they are of underlying causes the sooner we may get diagnosed and save a lot of heartache and searching for answers.”
A big thank you to PHARMAC for gifting RDNZ the stand to allow RDNZ to raise awareness of rare disorders.