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Patient Support Groups

 

Alopecia Areata | Eczema | Gorlin Syndrome | Melanoma | Nevus (Congenital Melanocytic Naevus (CMN)) | Psoriasis |Vitiligo

 

There are a range of groups that provide patient support services for those affected by various dermatology conditions. Your GP or dermatologist will be able to provide you with information. Some are listed below:

 

Australia Alopecia Areata Foundation Inc (AAAF) 

Founded in 2010, Australia Alopecia Areata Foundation Inc. (AAAF), was established to be the national body supporting research to find a cure or acceptable treatment for all forms of Alopecia Areata, support those with the disease and their families, and inform the public about all forms of Alopecia Areata. 

 

The AAAF Committee consists of a group of dedicated individuals who work full-time or have their own business. They contribute their time, knowledge, passion & contacts to assist the Foundation to achieve our mission.

 

For further information, see their website at aaaf.org.au


DEBRA AUSTRALIA

 

DEBRA (Dystrophic Epidermolysis Bullosa Research Association) Australia aims to educate and support Australian families living with EB. DEBRA works to investigate and implement programs, to help EB sufferers to improve their care and quality of life.

DEBRA also offers financial and emotional support and networking opportunities for families.

Aside from its work with Australian EB patients, DEBRA works to educate healthcare professionals and the general public about EB and raises vital money for research, so that one day researchers can find a cure for this rare condition.

DEBRA is a not-for-profit volunteer-based organisation that does not receive any direct government funding.

Patients, their family members and carers, as well as healthcare professionals, can contact DEBRA Australia:

Simone Baird - DEBRA Family Support Coordinator

Mobile: 0413 967 609

Email: ebfamilysupport@debra.org.au


Sue McKenna - DEBRA Australia Secretary/ Coordinator

Phone: (07) 4693 7003

Mobile: 0427 937 003

Email: admin@debra.org.au


Postal Address:

DEBRA Australia
PO Box 226
Pittsworth QLD 4356 

 

 For further information, see also Learn About Epidermolysis Bullosa and also DEBRA.

 


Eczema Association Australasia

The Eczema Association of Australasia’s aim is to improve the life for those involved with Eczema through community representation and education.The EAA aims to reach all those Australians who live with this debilitating disease everyday. They need to know that they can get help, support, education and relief.

 

The EAA has a good working relationship with Australian & international Dermatologists; natural therapists; other medical practitioners; pharmaceutical companies; political representatives from various parties and many companies who manufacture products which may be beneficial to eczema sufferers. 

 

For further information, see their website at eczema.org.au.

 


Gorlin Syndrome

This is a rare, inherited skin cancer otherwise known as Basal Cell Carcinoma Naevus Syndrome (BCCNS) or Basal Cell Naevus Syndrome (BCNS).  The basal cell naevi are actually minute basal cell carcinomas.

 

Patients with Gorlin syndrome are keen to share their tips and experiences with others who have the same skin problem, but are often reluctant to come forward about it. The Foundation is happy to support this network.

 

(More information on their network to come. In the meantime, email us, and we will put you in touch.) 

 

Click here for more information about Gorlin syndrome.

 


MELANOMA PATIENTS AUSTRALIA

Melanoma Patients Australia (MPA) is the peak national patient body representing the interests of melanoma patients, their carers, family and friends. Melanoma Patients Australia strives to reduce the impact of melanoma on all Australians. 

 

Melanoma Patients Australia offers: 

 

  •  Information on current melanoma treatment options, research and clinical trials. MPA also hosts throughout Australia free Patient Symposiums, Seminars, and Health Expos as well as regional public melanoma forums.
  • Support through a national network of patient meetings, online forum and website, and through the MPA support hotline 1300 88 44 50
  • Advocacy as the national voice of melanoma patients, their family, friends and carers protecting their rights and interests.
  • Awareness in the Australian community of the risk factors for melanoma, prevention programs such as Danger Sun Overhead and the importance of early detection of melanoma.
  • Understanding, hope and inspiration

 

For further information, call 1300 88 44 50, see their website at www.melanomapatients.org.au or email info@melanomapatients.org.au.

  


Nevus Support Australia Inc

Nevus Support Australia Inc is the not for profit Australian patient advocate group for individuals and families affected by Congenital Melanocytic Naevus or CMN. Established in 2002 and run entirely by volunteers.

 

They welcome patients, family, Doctors, Scientists, Philanthropists and anyone with an interest in this disorder. 

 

Their aims are to:

 

  • Provide on-line and telephone support to members; 
  • Bring together individuals and families affected by CMN; 
  • Raise public awareness of CMN and associated conditions; 
  • Encourage research into this disorder and associated conditions; 
  • Work with the medical community and other organisations to gain knowledge, support and understanding.

 

Nevus Support Australia Inc have a facebook group for families, a public page for any interested people  https://www.facebook.com/NevusSupportAustralia, a group for those who have lost someone to CMN, a group specifically for CMN youth and a group for Global CMN leaders in patient advocacy.   

 

Nevus Support Australia Inc are also a founding member of Naevus Global – www.naevusglobal.org

For further information, see their website at www.nevussupport.com or email michelle@nevussupport.com.


Psoriasis Australia 

Psoriasis Australia strives to assist people with psoriasis, or those wanting to know about psoriasis, by providing beneficial information and support enabling educated decisions to be made on treatment choices and lifestyle changes. 

 

"Our mission is to be a valuable source of information and support to people with psoriasis in Australia, to ensure we are at the forefront of the latest psoriasis developments and have a team capable of providing information and support to our growing membership.  We aim to drive efforts to cure psoriasis and improve the lives of those affected."

 

For further information, see their website at psoriasisaustralia.org.au or their Facebook page Psoriasis Australia.

 

Psoriasis Australia can be contacted by email at info@psoriasisaustralia.org.au or by 'phone on +614 8134 6160.

 


Vitiligo Association of Australia (VAA) 

The Vitiligo Association of Australia (VAA) was founded in September 2010 for patient support, public education and the promotion of research into vitiligo within Australia. 

 

Anyone with an interest in this condition, be they a person with vitiligo, a family member, a friend, a clinician, a scientist, an allied medical professional or a philanthropist can join this not-for-profit association and its affiliated Patient Support Groups.  Members have the added advantage of benefiting from international links and information resources through the World Alliance of Vitiligo Support (WAVS).

 

For further information, see their website at  www.vitiligo.org.au 

 


If you would like your patient support group listed here please contact us.  We would be delighted to ensure your group is listed.  


 

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