Helping People With Velocardiofacial Syndrome in QLD

(07) 3011 7684

info@vcfs.com.au

Welcome to Raise Hope What We Do?

Aware

Velocardiofacial Syndrome (VCFS) is a deletion syndrome caused by microdeletion of chromosome 22 at band q11.2. Due to the missing chromosome, people with VCFS can have cardiac defects, cleft palate, face abnormalities, hearing loss, genital/urinary abnormalities etc. These issues are varieties of VFC and our aim is to raise awareness among Australians to help tackle this health issue.

Educate

Even in this modern 21st century world filled with advanced technologies and solutions; majority of the people still do not know much about VCFS. Thus, our team of experts use this platform to inform and educate as many people as possible about this syndrome and how it can be treated. This can help parents and elders spot signs of this disorder early on and treat it in time. Our main aim is to highlight this health issue so people can be more knowledgeable about this disorder and can help people who are suffering from it.

Research

Our foundation also takes part in various researches regarding the Velocardiofacial Syndrome in Queensland and other parts of the country. We consult with international experts on this matter to find innovative ways to help every individual. We use the finding of our research to educate the people.

Inform

We are an informative platform where you can learn everything you can about Velocardiofacial Syndrome also known as the 22q11.2 deletion syndrome. This genetic disorder usually presents itself early in children, but symptoms can appear anytime in a person’s life. Thus, offering information is our prime aim to people suffering from the issue or know someone who does.

We have dedicatedly raised awareness and provided information about Velocardiofacial Syndrome. Since it is a medical condition that is genetic and varies from person to person. These problems can range from an opening in the roof of a person’s mouth to a cleft palate. It can also include a number of other defects in a child, like problems fighting infection; heart defects; low calcium levels; a distinct facial appearance; varied learning problems; differences in the how the kidneys are formed and work; and feeding and speech problems.

Our Mission Provide Information & Raise Awareness

Velocardiofacial syndrome (VCFS) is a genetic condition developed by abnormal pharyngeal arch development that causes defective development of the parathyroid glands, the conotruncal region of the heart and thymus. However, there is no cure for this syndrome, but many of its related health issues can be treated. Our team understands the thick and thin of these conditions and work tirelessly to provide useful and verified information.

At Raise Hope, we work effortlessly to improve the lives of people with Velocardiofacial Syndrome. If someone in your family is suffering from VCFS, explore our platform to get inclusive information about the disorder. The health conditions in this syndrome may vary from person to person, but we help generate awareness and educate people. Some of the common health hazards are heat defects, low calcium levels, cleft palate, weak immune system, kidney problem, speech difficulties and much more.

Stay Informed All About VCFS

Most Undiagnosed Syndrome

22q11.2 Deletion Syndrome also known as Velocardiofacial Syndrome (VCFS) is a genetic disorder. It is one of the Australia’s most undiagnosed syndromes and majority of people don’t know anything about it until their child or they themselves start showing symptoms. VCFS affects 1 in 1000 births and it commonly remains undiagnosed because there are so many symptoms.

Treatments for VCFS

Treatments are available for Velocardiofacial Syndrome and usually based on the symptom. In some cases, supplements are enough, while in other cases, surgeries become essential. Surgical treatments for VCFS include repairing heart defects, treating cleft palate, reconstructing lower jaw/ear etc.

Associated Problems

People suffering from 22q deletion disorder or VCFS can have multiple facial deformities like low set ears, underdeveloped jaw, long face with prominent upper jaw, slanted down mouth etc. Heart issues like VSD, pulmonary atresia, right-sided aortic arch, truncus arteriosus etc.

Need for Surgery

When a person is suffering from Velocardiofacial syndrome, various health issues can occur. Surgery is required when the abnormalities are significant or affect your quality of life. If you want to know when exactly VCFS sufferers need surgery, then consulting a doctor is the best option. Most doctors will identify the abnormalities upon birth & suggest surgery.

Staying Physically Active

Children and adults suffering from VCFS should stay physically active within their capacity. Talk to your physician to understand what kind of activities you can undertake without exerting your body or making things worse for your condition. With our help you can find a community and information regarding VCFS.

Dealing with Difficulties

People with VCFS face various difficulties in their daily life that includes learning problems feeding, and speech problems. If you want to help a person or need help as VCFS suffer, then you need to know the correct approach. Start by gaining as much information as you can about the disorder and get treatment.

Your VCFS Community Need a place to understand VCFS? Our platform is one of the best in Australia offering information, educate and awareness regarding 22q deletion syndrome. We bring change through developing a society empowered by advocacy, and research.

Know Us Our Platform

VFCS or 22q deletion syndrome abbreviated as 22q happens when a piece of DNA on the 22nd chromosome is missing. Usually, the syndrome is diagnosed early in childhood but diagnoses can be made when a person becomes a teen or adult. Our platform is dedicated to raising awareness, providing correct information and works relentlessly for the betterment of kids and grown-ups with Velocardiofacial Syndrome. Operated from Queensland, our virtual platform is accessible to people in major cities like Brisbane, Gold Coast and Sunshine Coast in addition to rural regions of Queensland too. We want people with this syndrome to feel at ease about this condition and know that there are more people who have it and manage to live their lives without compromising on anything. We help parents, family members and carers taking care of people with VCFS to learn as much as possible about the syndrome because knowledge is power.

To run an informative and trustworthy platform, we need contributors with extensive knowledge and experience. Therefore, our website has insights and information from reputed healthcare professionals and people suffering from 22q deletion syndrome. Due to inputs from experts and people with VCFS, our platform is a guide for Velocardiofacial Syndrome and the health issues related to it. Through our website you can learn about treatments, requirements of such people, the difficulties they face and ways to improve their lifestyle. We are one of the leading VCFS awareness websites in Queensland.

Did you get a new diagnosis for Velocardiofacial Syndrome or 22q? Or has your child or someone close received a diagnosis? Understandably, it is a difficult and challenging time. Such a diagnosis is daunting and it can be overwhelming because you have to navigate through a hoard of information and medical jargon. Since the disorder is rarely heard of by people, not everyone is well-versed. Therefore, we are dedicated to providing guidance and information regarding VCFS to eliminate ignorance about this syndrome at affects at least 1 in 1000 people.

Attending seminars is one of the best ways to learn about Velocardiofacial Syndrome. These events are perfect for two-way communication with experts. Every year hundreds of seminars enlighten about VCFS are held in Brisbane, Gold Coast, Sunshine Coast and other regions of Queensland. Therefore, you must keep an eye out for these events to meet people suffering from VCFS or people who are related to someone who has the disorder. What’s more, if you cannot attend physically, join a webinar to attend virtually.

Our Strength Our Most Experienced Members

Thomas Brown

Psychologist

Thomas is working with our platform for last many years and helps by provide information for the mental health people with VCFS and their behaviour.

Emily Taylor

Social Activist

Emily is a social activist and working with the VCFS foundations for over a decade. She coordinates with medical, educational and government institutions.

Jack Wilson

Social Activist

Jack is also a social activist who keeps track of people who have this syndrome and need any kind of help or support for it.

Grace Johnson

Speech Specialist

Grace is with us from our initial days, and she helps kids and grown-ups who have this problem and find it difficult to talk.

Join Us Become a Part of our Community

If you want to help the people who are suffering from Velocardiofacial syndrome, then you can join our community. As we are informing more and more people about VCFS, we need the help of contributors. If you believe that you have the intention and ability and enough time to do something good for these people, then you have become a part of this community. We are always looking for people who can dedicate their time and care to people who really need it in their day-to-day life. Come be a part of this beautiful journey where you can help people and children with this syndrome and spread information. You will bring a smile to so many faces and feel like spreading more joy and make the world a better place.

Know Your Role

You can join us as a contributor and learn what role you will play. In other words, join you will help the people and the community. It is a great experience for most people because it increases your sense of purpose and help you help others selflessly.

Talk to the Experts

Our experts will have a word with you about your ideas, educational background and will share their views. They can help you learn more about Velocardiofacial Syndrome and how they can provide assistance to people suffering from the genetic disorder and their family members.

Know Your Role

You can join us as a volunteer and know what role you will play. In other words, join you will help the people and the community. It is a great experience for most people because it increases your sense of purpose and help you help others selflessly.

1/1000

People have VCFS

22q11.2

Deletion Syndrome

1/2000

Newborns Diagnosed

75%

Patients with Heart Defects

What You Missed? Facts About VCFS

Velocardiofacial in Australia

Velo-cardio-facial syndrome (VCFS) is nowadays known as 22q11.2DS and also had the name DiGeorge Syndrome.

01 VCFS or 22q11.2DS is genetic but not hereditary

02 It is the most common microdeletion syndrome

03 More common than cystic fibrosis or Huntington's

Our Testimonials What People Say

“I would like to thank the VCFS community for helping our 8-year-old son. As he has this syndrome, it was difficult for him to talk and learn new things, but VCFS changed everything.”

Steve Robinson

“My brother has Velocardiofacial syndrome, and thus he always had some behavioural issues and not very social. Then I came to know about the VCFS community, and they help him a lot.”

Stacy Thompson

“I am social activists and work in the Brisbane region. While doing a survey on Velocardiofacial syndrome in Brisbane, I came to know about the VCFS and learn how commendable their job they are doing.”

Adam Wilson

My 5-year old son has this problem for a long time, and we were looking for the right help. Then someone told me about the VCFS. They helped my son in more than many ways.

Lucas Turner

Solve the Issues Most Common Problems in Velocardiofacial Syndrome

Health Issues

People with this syndrome often have heart defects, a cleft palate, etc. We provide the best treatment to such people.

Unable to Learn

We offer information about therapies that can help the kids to learn and understand in a better way.

Unable to Speak Properly

This syndrome also causes speech problem in kids. How community help such kids with their speech.

Unable To Behave Appropriately

Social behaviour is also a problem with such people; we know the best ways to change things properly.

Our Blog Our Latest Blog

What is Velocardiofacial Syndrome (VCFS)? And what causes it?

Post On : 25 Apr, 2024

The velocardiofacial syndrome is recognised by plenty of names, such as the craniofacial syndrome, Shprintzen syndrome, DiGeorge syndrome, conotruncal anomaly face syndrome, etc. The actual term comes from the Latin…

Let’s Embrace People with Velocardiofacial Syndrome