ZC4H2 Research Foundation, Inc

Una gran organización, que proporciona mucho apoyo y conocimiento

Desde que tuvimos el diagnóstico ZARD de nuestro hijo, nos pusieron en contacto con la fundación, y desde ese momento nos han acompañado en la evolución y desarrollo del niño.
Estamos totalmente agradecidos, con todas las personas increíbles que desde el día uno han estado a nuestro lado.

The group is very helpful and informative. Cathy the organizer is very knowledgeable. I’m glad this was created because it comes as a shock to many parents who don’t know what to expect after a diagnosis.

Gran trabajo y muy profesionales. Muchas gracias por todo!!

When together with my wife, we've learned that our son has ZARD (ZC4H2-Associated Rare Disorder) we had no idea what to do, neither did our doctors. The Foundation not only provided us with tremendous amounts of information about our son's condition, but also connected us with other parents. It has also given us a lot of hope, going beyond just telling us what is already known, but also orchestrating the research about ZARD.

We are extremely grateful for all the people associated with the Foundation for working on increasing the comfort of life of our kids, and also our own - the parents. We are very optimistic about the future, knowing that the research may bring significant improvements to the understanding of the condition.

Excepcional Organización Gestianada por personas maravillosas !! Un 10

The ZC4H2 Research Foundation is trailblazing the path to increase our understanding of ZARD, while providing tools for parents, clinicians and researchers to better advocate for the patient population. We are honored to be Founding Members of the US Chapter and work along side this committed group of families to improve the lives of our children.

The ZC4H2 Research Foundation, originally founded in the Netherlands and having expanded to the USA early 2022 has been instrumental in providing relevant information to the global ZARD patient & parent community. Until its inception there was extremely little information available and the foundation through its outreach on Facebook, their website and other channels has been able to provide so much practical guidance and information on the condition. The research on ZC4H2 was extremely limited in the past. The foundation has now been able to fund and support 6 research projects and 3 different cell banks, all of which has produced critical science. Not to mention through the foundation's hard work, ZARD has become visible and is now recognized by organizations such as NORD and other institutions. The work is being done by a group of highly committed parents and is supported by the Orphan Disease Center of the University of Pennsylvania.

The ZC4H2 Research Foundation is making great strides in improving the lives of those living with ZC4H2 Associated Rare Disorders (ZARD). This parent-run organization strives to increase our understanding of this rare disorder to help support and treat those affected by ZARD . ‘Hope through science’!

Hola! Soy madre de una pequeña niña de 4 años y medio, vivimos en Colombia, somos diagnosticados desde los 8 meses, pero nunca en mi país habíamos encontrado tanto conocimiento y ayuda sobre la alteración genética cómo la encontramos con la fundación zc4h2, ha sido de vital importancia para los diferentes procesos que se han realizado con Valeria, Cathy su fundadora siempre está dispuesta a compartir conocimientos y experiencia, lo cual nos ayuda mucho en en el momento de tomar decisiones en cuanto a tratamientos o cirugías en una enfermedad ultra huérfana con tan poca literatura médica y conocimiento.

Esperamos poder seguir contando con su valiosa ayuda y de algún modo aportar con algunos recursos que permitan seguir con el estudio científico.

So excited to have this group! They have been a tremendous source of information and are working very hard at providing information to families such as ours regarding ZC4H2. We were fortunate enough to meet some of the members at a fundraising event in Philadelphia called the Million Dollar Bike Ride. The ZC4H2 Foundation had some of it’s own riders participating in the race, which made me very proud. Also we were able to meet other ZC4H2 families which was so awesome. They are facilitating our communication and bringing awareness to the community.

When you have a child with a condition so rare that there are only a handful of known cases in the whole world and there is absolutely no medical or scientific information about it, and there is no one, anywhere in the world, who knows how to treat your child, you can imagine the desperation and hopelessness one feels. The ZC4H2 Research Foundation was created by parents in the hope to gain knowledge about the condition and to find ways to treat our children appropriately to improve their quality of life. Thanks to the work of the Foundation and the research it has supported, we grew our community from 13 cases in 2015 to about 250 cases today. With the knowledge we have gathered and disseminated for the last 5 years as well as the scientific research projects we have funded, we have guided parents, care givers and doctors to a better care for children touched by ZC4H2 Associated Rare Disorders (ZARD), improving their medical care and ultimately their quality of life. We are just scratching the surface and much more work needs to be done to understand this condition and find viable, long lasting therapies. We need your help to help us giving hope to our children and families. Please visit www.zc4h2foundation.org

The ZC4H2 Research Foundation has contributed greatly to my children's health. Due to the information shared among parents in the Foundation's Facebook group, my boys were both screened for tethered cord and diagnosed. The surgery was successful, and my oldest son had his pain reduced significantly. Without a foundation pushing awareness among the medical community and patient community, children like mine, living with ZARD, would be left to a life in pain. The condition is so rare it is only from sharing within the parent community that we continue to find patterns on symptom profiles and as a result, better treatment guidelines. For example, when my boys were diagnosed 7 years ago, the literature stated that ZARD was only diagnosed in males. Now the current findings in the community show that ZARD is 70% female! This wouldn't be possible without research and more accurate publications. A year ago, I was invited to be a part of the Foundation as a board member, and I am truly honored. Now I hope I can help further the mission and initiatives of this great parent-led group.