Support
The Trisomy community may be small but it is very passionate. On this page you will find a list of organisations, support groups and resources to help you navigate the world of rare chromasome conditions. Many of these groups are volunteer based and consist of families and carers with first hand experience of Trisomy, who are willing to share their knowledge and support.
Australian Based Groups
ARCAN
We are a group of parents, who aim to help other parents and families. We have all walked the rare chromosome path and we are at different stages in our journey. With our experience and support we want to help other families who are also riding along this rare chromosome path.
Support group
Visit the ARCAN Website
Rare Voices Australia
Rare Voices Australia (RVA) is Australia’s peak organisation for rare disease, advocating for Australians living with rare disease. We provide a strong, common voice to advocate for health policy and a health care system that works for people living with rare disease. Our person-centred focus sees RVA working with key stakeholders including people living with rare disease/advocates, key peak bodies, governments, researchers, clinicians and industry to promote rare disease, diagnosis, access to treatments, data collection, coordinated care, access to services and coordinated research.
RARE Voices Australia
Advocates for Australian’s living with rare disease.
Steve Waugh Foundation
The Steve Waugh Foundation aims to support children and young adults aged 0-25 years who have a rare disease with a prevalence of at least 2:100,000 by providing grants to assist in accessing treatments and improving quality of life.
The Foundation will consider funding:
Government approved Medicines
Treatment
Equipment
Some, but not all, minor house renovations or items that improve the quality of life for the applicant and their family.
Grant GuidElines
Grant guidelines and full funding criteria
can be found on their website.
Heartfelt
Heartfelt is a volunteer organisation of professional photographers from all over Australia dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature births, or have children with serious and terminal illnesses.
Photographic Memories
Free services from professional photographers.
Booklets and Care Info
Care Book
Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers potential problems and care of the live born infant and living child. The book is continually updated as new information becomes available and is the only known resource of its kind.
This book was written and is regularly updated by the incredible people at SOFT USA
Care of the Infant and Child
with Trisomy 18 or Trisomy 13
“The Care Book” for families
4th edition, January 2018
International Trisomy 13/18 Alliance
We are a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes respectively). Our mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate information and resources, and to be a mechanism for sharing between groups.
The ITA website includes research publications about medical interventions and outcomes for children with trisomy 13 and 18. Some articles describe examples of surviving children who benefit from treatment and surgeries, and live a happy and valued life. Translations of books are available on the website.
Free support booklets
for parents and children
Available in multiple languages.
Great resources for non-english speaking families.
International Groups
Trisomy 9 International Parent Support
9TIPS is an international support group for families dealing with Trisomy 9 covering all variations. This includes Trisomy 9p, Trisomy 9 Mosaic, Trisomy 9q etc. Our goal is to provide families with support through a parent network system, to share their successes and experiences with each other. 9TIPS began in 1992 by the original founders and proud grandparents of two beautiful girls, Bill & Alice Todd. We now have a large network of families world wide, all dealing with similar issues.
SOFT USA
SOFT began with Kari Deanne Holladay (1977-1988) who was born with trisomy 18 and survived longer than predicted. Kari’s mother, Kris Holladay, and Dr. John C. Carey (Professor of Pediatrics/Medical Genetics, University of Utah) co-founded SOFT in 1980. Dr. Carey, medical advisor for SOFT, suggested that SOFT include both trisomy 18 and trisomy 13 families as the life span and issues of care are similar in both disorders.
SOFT UK
SOFT UK was founded in 1990 by two mothers, Christine Rose and Jenny Robbins. They had discovered first-hand that there was a lack of support and information for families affected by Trisomy 13 (Patau’s syndrome), Trisomy 18 (Edwards’ syndrome) and related disorders.
