Annual Report

In 2016/2017, the APF continued to be focussed on achieving our mission to support and educate people impacted by pituitary conditions. In line with this, we drove initiatives to create awareness and provide relevant information to the general and medical communities and act as a collective voice for pituitary patients and their families

Patient Educational Seminars

We held a couple of successful patient seminars, at Lady Cilento Children's Hospital in July 2016 and John Hunter Hospital in August 2016. The feedback received from patients, carers, and health care providers was very positive.
The Foundation recognises the importance of continuing to hold these sessions going forward. These sessions would not be possible without the support of the doctors, Endocrine nurses and hospital staff who give up their time as well as our generous volunteers.

Engaging with industry and key stakeholders, domestically and internationally

APF representatives attended the Endocrine Nurses Society of Australia Conference in August 2016 which provided the opportunity to create awareness and grow relationships. We also had the opportunity to interact with representatives of the Endocrine Society of Australia, as a sponsor of their Conference in June 2017, similarly to create awareness amongst the Endocrinology community.

The ESA have also been strong supporters of the Australian Pituitary Foundation. The APF will prioritise growing relationships with the ESA and ENSA going forward.

Internationally, as one of the founding member organisations of the World Alliance of Pituitary Organizations, the Australian Pituitary Foundation is developing a strong reputation globally. WAPO is an alliance of pituitary and related diseases patient organizations who have united to strengthen patient voices to work towards improved pituitary disorder diagnosis, greater access to health care treatments. The APF attended the World Alliance of Pituitary Organizations Summit in Amsterdam in May 2017. It provided APF representatives with the opportunity to interact with 31 delegates from 25 organisations and 20 countries, learn from best practice, and latest developments from 5 very well respected international key note speakers, patient advocates and other presenters. Knowledge and insights learnt will be used to benefit the APF community.

Organisational Updates

To drive the foundation forward, we felt we needed to make some positive changes to the structure and governance of the organisation. A number of new Board members were officially voted in by the members at the AGM in November 2016. This is a very exciting stage for the Foundation. The various new Directors have brought their skills to the Foundation and their varying backgrounds include skills in Fundraising, Marketing/Social Media, Legal, Finance/Governance and Not for Profit experience. These diverse backgrounds bring new and fresh perspective while still maintaining a focus on our ultimate mission.

The Board held a strategic planning weekend, and discussed key focus areas of awareness and patient support and discussed key initiatives and actions that were required to drive these fundamental objectives. The Board will continue to work to understand the needs of our patients,their carers and those impacted by pituitary conditions and will work to develop a robust and clear strategic vision which will be communicated once refined and finalised.

In other developments, Sue Kozij and Beth Killeen, previous Directors, retired from the Board, but still remain involved as their knowledge is invaluable. Sue will continue to be responsible for day to day operations and support the Board.

Governance

With advice from our lawyers, we made some changes to the governance structure, Constitution and Board Charter to simplify the membership structure and allow as to more efficiently achieve our strategic objectives. These changes were voted in at the 2016 AGM. Advocacy Acting as a voice for our members is a key focus for the APF, and we played an integral role in providing input to consumer submissions for Pegvisomant (for treatment of Acromegaly) and Growth Hormone for severely affected adults. We engaged our member base and provided a comprehensive suite of information including compelling patient testimonials, videos and positive difference inclusion of certain treatments on the PBS would make to patients, their carers etc. We received feedback from key stakeholders that the APF's input to the consumer submissions was invaluable and was able to provide a wholistic view of the impact of the disease and the necessity and need for increased treatment options for patients. It also highlights the importance of APF to act as a voice for our patients and their families and the critical role we place in advocacy.

Member engagement

We continued to engage with our members through our newsletter which, thanks to the contributors from our community (members, doctors, other stakeholders) is always very informative and well received. We also continue to be contacted regularly by patients, carers and newly diagnosed patients, or people impacted directly or indirectly by pituitary disease, seeking support from those with a similar experience and we continue to assist where we can to connect them with the appropriate person or direct them to the relevant service/resources to support them During the year we had two state coordinators retire due to family and personal reasons. Therefore, our face to face activities have been reduced temporarily. The current Board will soon be actively looking to recruit new state coordinators in most states in the coming year.

Pharmaceutical relationships

As a small not for profit organisation we rely on and are very grateful for the support we continue to receive from our sponsors Ipsen, Pfizer, Novo Nordisk, Novartis, SciGen, Ferring, Boehringer Ingelheim, Chiasma, Merck Serono Australia. We value and will endeavour to deepen the relationships and look at further ways we can work together to achieve mutually aligned objectives into the next financial year. The importance of patient organisations is becoming increasingly apparent and recognised by key stakeholders, from the patient and carer community, medical community, pharmaceutical community and amongst key policy decision makers – both domestically and internationally. This puts the APF in a good position and the Board is committed to identify key areas of focus and set a solid operational and strategic platform to grow the organisation into the coming year – continuing to support patients and their families as they progress through their challenging pituitary journey.