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Australian Pituitary Foundation

Contact

Name: Kimberly Downes

Position: Co-Chair

Email: support@pituitary.asn.au

Website: http://www.pituitary.asn.au

Address

PO Box 3020

Cotham VIC 3101

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Our Mission / Objective

The Australian Pituitary Foundation aims to provide support and information for both adults and children with pituitary conditions, their families, healthcare professionals and the public.

Our Services

Being classified as rare diseases, long journey to diagnosis or even misdiagnosis of pituitary conditions is sadly a common patient experience. The average delay in diagnosis of pituitary conditions at present (year 2021) from first clinical symptoms is 6-8 years. Left undiagnosed, pituitary conditions result in a decreased life expectancy of 8 years.

Even after a diagnosis, pituitary patients and their families often feel misunderstood by many due to the lack of awareness on pituitary diseases and their symptoms as compared to other better understood major chronic illnesses. This feeling of isolation normally compromises patient’s wellbeing.

Therefore, it remains a vision of APF that early diagnosis and proper treatment will lead to a normal life expectancy and quality of life for all living with pituitary conditions.

To that ends, the APF has the objectives to:

  • provide a forum for the exchange of information and ideas and for the discussion of problems related to pituitary disorders;
  • promote public awareness of pituitary disorders and the need for government support;
  • act as a resource group providing support and disseminating information; and
  • encourage scientific research for the prevention, alleviation, care, treatment and cure of pituitary disorders.

The support services provided by APF is free of charge. We are a not-for-profit organisation solely funded by donations, corporate sponsorships and membership fee, receiving no funding from the government.

Our Beneficiaries

The beneficiaries include:

  • adults and children living with pituitary diseases
  • families of pituitary patients, especially carers
  • healthcare practitioners having an interest in treating pituitary conditions
  • allied health professionals wanting to improve patient wellbeing with more relevant support 
  • researchers aiming to find better pituitary treatments to improve patient outcomes 
  • anyone who wants to learn about the rare disease

Projects in Progress

  1. Patient Connection Projects for pituitary patients that are specific to needs during their pituitary journey.
  2.  Patient Education Projects focusing on stories of Central Precocious Puberty.
  3. Primary Healthcare Provider education webinar focusing on growth hormone.
  4. Advocacy for the accessibility of long-acting growth hormone treatments to both adult and children who are growth hormone deficient.
  5.  Biobank Project that supports research on aggressive pituitary tumours.

Our People

CEO

Malini Raj, Co-Chair

Leadership Team

The APF Board is supported by the following subcommittees:

  • Patient Support led by Malini Raj
  • Pharmaceutical Relations led by Lisa Sullivan
  • Medical Advisory lead by Yi Yuen Wang
  • Fundraising/Communications led by Kimberly Downes
  • Finance/Risk/Governance led by Kimberly Statham

 

Names of Board Members

  1. Kimberly Downes
  2. Geoffrey Musgrove
  3. Robert Price
  4. Malini Raj
  5. Kimberly Statham
  6. Lisa Sullivan
  7. Yi Yuen Wang

Number of Employees

1

Number of Volunteers

15

Registration Information

ABN

13088357902

Tax Deductible

Yes

How to help us

Wills and Bequests

We are willing to work with your legal advisor on the wording.  Please contact support@pituitary.asn.au. 

General Donations

Donation can be made online by clicking on the link https://pituitary.asn.au/donate-now/ and select from one of the following programs that you would like to support:

  • Community Support
  • Education Program
  • Research Fund

Work with us

Volunteer with us

Our Annual Reports

Our Mission / Objective

The Australian Pituitary Foundation aims to provide support and information for both adults and children with pituitary conditions, their families, healthcare professionals and the public.

Our Services

Being classified as rare diseases, long journey to diagnosis or even misdiagnosis of pituitary conditions is sadly a common patient experience. The average delay in diagnosis of pituitary conditions at present (year 2021) from first clinical symptoms is 6-8 years. Left undiagnosed, pituitary conditions result in a decreased life expectancy of 8 years.

Even after a diagnosis, pituitary patients and their families often feel misunderstood by many due to the lack of awareness on pituitary diseases and their symptoms as compared to other better understood major chronic illnesses. This feeling of isolation normally compromises patient’s wellbeing.

Therefore, it remains a vision of APF that early diagnosis and proper treatment will lead to a normal life expectancy and quality of life for all living with pituitary conditions.

To that ends, the APF has the objectives to:

  • provide a forum for the exchange of information and ideas and for the discussion of problems related to pituitary disorders;
  • promote public awareness of pituitary disorders and the need for government support;
  • act as a resource group providing support and disseminating information; and
  • encourage scientific research for the prevention, alleviation, care, treatment and cure of pituitary disorders.

The support services provided by APF is free of charge. We are a not-for-profit organisation solely funded by donations, corporate sponsorships and membership fee, receiving no funding from the government.

Our Beneficiaries

The beneficiaries include:

  • adults and children living with pituitary diseases
  • families of pituitary patients, especially carers
  • healthcare practitioners having an interest in treating pituitary conditions
  • allied health professionals wanting to improve patient wellbeing with more relevant support 
  • researchers aiming to find better pituitary treatments to improve patient outcomes 
  • anyone who wants to learn about the rare disease

Projects in Progress

  1. Patient Connection Projects for pituitary patients that are specific to needs during their pituitary journey.
  2.  Patient Education Projects focusing on stories of Central Precocious Puberty.
  3. Primary Healthcare Provider education webinar focusing on growth hormone.
  4. Advocacy for the accessibility of long-acting growth hormone treatments to both adult and children who are growth hormone deficient.
  5.  Biobank Project that supports research on aggressive pituitary tumours.

Our People

CEO

Malini Raj, Co-Chair

Leadership Team

The APF Board is supported by the following subcommittees:

  • Patient Support led by Malini Raj
  • Pharmaceutical Relations led by Lisa Sullivan
  • Medical Advisory lead by Yi Yuen Wang
  • Fundraising/Communications led by Kimberly Downes
  • Finance/Risk/Governance led by Kimberly Statham

 

Names of Board Members

  1. Kimberly Downes
  2. Geoffrey Musgrove
  3. Robert Price
  4. Malini Raj
  5. Kimberly Statham
  6. Lisa Sullivan
  7. Yi Yuen Wang

Number of Employees

1

Number of Volunteers

15

Registration Information

ABN

13088357902

Tax Deductible

Yes

How to Help us

Wills and Bequests

We are willing to work with your legal advisor on the wording.  Please contact support@pituitary.asn.au. 

General Donations

Donation can be made online by clicking on the link https://pituitary.asn.au/donate-now/ and select from one of the following programs that you would like to support:

  • Community Support
  • Education Program
  • Research Fund

Work with us

Volunteer with us

Our Annual Reports

PRINT

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