May 14th Panelist

The World Conference of CDG is important to our family and the wider CDG community to ensure that we are all up to date with the latest developments in research and treatment options. This allows us to provide Louis and all people with CDG, the highest quality care and life we can. Furthermore, connecting with the wider CDG community is paramount to raising a child with CDG. Having the support of fellow parents, clinicians and other CDG personnel help make the journey enjoyable and enlightened.

The Conference means to my family, above all, finding out we are not alone and there is hope for research about CDG.

The conference is very important to me because it provides information for both the families and the research communities, we need each other in order for all of us to move forward.

Attending the World Conference on CDG is such a great opportunity to have access to the most up-to-date information on CDG directly from the Experts in the field as well as connect with and learn from other families in a sharing, friendly environment.

Knowledge about CDG helps me to walk the best possible path of life with my children

The World CDG conference is a remarkable event, bringing the strength and expertise of CDG patients, families, researchers and medical professionals together all at one time-driving progress and reigniting hope for a brighter future for those affected by CDG.

Collaboration and exchange of experience  between colleagues  is  extremely important especially in case of rare diseases. For me the best example of such successful international collaboration is teamwork of pediatric haemato-oncologists, who started to join forces decades ago and delivered excellent, step by step protocols (guidelines) for management of haemato-oncological diseases, rescuing lives of thousands. It’s also extremely important to involve families in the workgroups and deliver information to interested persons in understandable and efficient way.

As long as CDG are severe diseases mostly without treatments, conferences remain very important tools to raise awareness for CDG, to bring families together to support each other, and to bring scientists together to learn what it means for the patients and the families to have a CDG thus increasing their motivation to devise efficient treatments.

The CDG World Conference is vital to families around the world who are looking for other families and professionals to turn to for support. It is important for families to see as many people as possible who care about improving the lives of those affected by CDG, and for those families to share their experiences of CDG with others.

The World CDG Congress is of the utmost importance to me as a parent of a child with CDG. It is an opportunity to connect with other families, learn about the latest research happening around the world, and gain renewed hope for the future.

I think the world CDG Congress is a relevant event because it brings families together in a fight to find a cure for a very complex disease.

Although CDG is ultra-rare in this world, connecting through the CDG World Conference and in our community is incredibly valuable and gives us a chance to gain knowledge, support and hope during our CDG journey.

1. It is one of a kind meeting where scientist (health care, allied health care, basic biologist, chemist, pharmacologist etc.) has the opportunity to get together to learn and plan a strategy for the future (wide spread, early, reliable, cost conscious diagnostics approach and effective and affordable treatments;
2. And a great opportunity to meet the families affected with this disorder. Exchange ours and theirs expectations. To share our passion for CDG and the hope to find a cure.
3. To incite, invite, and mentor new generation of health care providers to excel in this field.

I feel the conference will bring together all of the separate social media groups, the families from across the world, the healthcare professionals and the scientific and research communities. 

All of which have a shared interest in CDG, creating a collective positive energy and propelling us forward.

Being a parent of a child with CDG, I have travelled a journey to upskill myself on this condition, and it is through collaborations with organizations, doctors, specialists, other parents and conferences that we are moving forward with such success and celebrating new ground breaking therapies and cures... Lets keep the momentum for those that really need our efforts.

World CDG Congress is also an opportunity to make available my expertise for the CDG community, but most of all, it is an exciting platform to co-construct meaningful research programs with both families and professionals.

De todas ellas, quizás la más importante para mí es que consigue crear una Comunidad cohesionada entre familias y especialistas, lo que permite que los conocimientos científicos conecten con la realidad que viven los pacientes y sus familias. Sin duda ninguna para mí ha sido el congreso más interesante y útil en que el que he participado.

The World CDG conference it’s extremely important to help raise awareness amongst the general public and to improve the quality of the information provided to the families and medical staff.  It brings together families, doctors, scientists and enthusiasts providing a sense of belonging to a community, helping many families feel supported and encouraged.

The World CDG Congress connects families and professionals, building awareness of the CDG experience, affirming scientific and medical professionals in their efforts to understand CDG, and giving much-needed hope to CDG families about their children's future quality of life. 

This Congress shares so much valuable information about CDG which in turn helps me to better understand and anticipate the what if’s for my Daughter. We need to educate on this condition to help other families make sure they are receiving proper diagnosis and care for their family members. I am honored to be a part of this event and to be able to share information on our story to help other families that are in our shoes.

As a parent of a child with CDG, the conference gives me a sense of belonging and community. There is absolutely nothing like being with people all driven by the same desire to learn, improve, and help one another. 

Rare Revolution Magazine gives a voice - and a platform - to patients, industry professionals, clinical and healthcare providers and the patient groups and charities that support over 8000 different rare conditions. Rare Revolution Magazine is a unique, first of it's kind publication, dedicated to giving rare disease a voice.

This conference is a unique and safe forum. A platform where professionals and families can openly talk and learn from each other!

Being rare, being chosen to fight this rare disease brings us parents a feeling of helplessness, fear and confusion so this type of event is extremely important because it gives us the information we want, support that we are not alone and instills hope and faith for easier everyday life.

The World CDG Congress is a relevant event from my point of view as I am a mother of Elijah aged 9 months who was diagnosed with PMM2-CDG type 1a, I have two other little boys Reuben aged 5 and Isaac aged 2 who are unaffected by this condition. It has been quite a journey since his diagnosis at 5 months of age, finding the right clinicians, correct treatments, support networks, vital information on his condition and seeking the right positive approach to helping him lead a fulfilling, happy life. 

It's an honor and great joy that for the first time medical professionals from Georgia and the patients organization "CDG Georgia" will take an active part in the World CDG Conference. This is an excellent opportunity to learn about the latest developments in CDG, strengthen collaboration with international experts ans transfer gained knowledge and experience in the real-life benefit of our patients and their families.

The 5th World Conference on CDG is the largest, most complete and resourceful, international conference focused entirely on CDG. It is the highest expression of love. The content is delivered in a patient-friendly style that can be understood by non-specialist audiences. Our wish is to help families to engage with clinicians and researchers more effectively and ensure that families are actively included in the healthcare decisions.