CCHS Network: Our Story

We are here to support CCHS patients and families. Let us know how we can best support you, and, please share your experiences with us! One World, One Family, One Hope!

The CCHS Family Network was founded in 1989 by Mary Vanderlaan following the birth of her CCHS son to increase awareness about this rare disease and provide education and support to CCHS families and patients. We are a non-profit, tax-exempt organization registered in the United States. The CCHS Network promotes communication across physician/patient communities in the US and around the world, while our CCHS Foundation and Research Advisory Board focus upon funding and facilitating critical CCHS research in the US and abroad. The CCHS Network is managed by a team of volunteers who all have children with CCHS.

The CCHS Network supports CCHS families coping with issues that arise in living with a family member who is technology (ventilator) dependent and whose respiratory status must be regularly monitored. We have learned that sharing our CCHS children’s or young adults’ challenges and successes through the CCHS Website and online discussion pages is an important source of inspiration and improved medical support for CCHS patients. Family discussions of high-tech homecare, medical issues and coping challenges have also yielded ideas for new areas of research on this rare disorder. By sharing patient experiences, new research and healthcare strategies and information with families and their physicians around the US and the world, the CCHS Network has provided meaningful voice to patients/families dealing with this diagnosis. Our primary means of communication include the CCHS Network Website, open and closed Face Book pages, newsletter, email and telephone.

We aim to inform families about resources and research without prejudice or predisposition toward any particular provider, technology, treatment strategy, research team or medical practitioner.

CCHS patients/families can register with the Network to access these support systems, including membership in our secure (closed) discussion group that provides a private space for families to share concerns and inspirations, ask and answer others’ questions!

Support CCHS patients and families in the pursuit of medical stability and empowerment, foster education and advocacy across CCHS medical and lay communities, and mobilize global resources to drive research for improved treatments and ultimately a cure for CCHS.

CCHS patients empowered to live full and productive lives.

Educating families and medical professionals about CCHS and supporting research are principal purposes of the CCHS Network. We work to share research findings, family observations, “survival techniques,” and other news and information to all those affected by congenital central hypoventilation syndrome.

Specific goals are:

  1. Register CCHS patients and confirm CCHS PHOX2B diagnosis.
  2. Connect CCHS families via Facebook, Twitter, Instagram and other online social communities.
  3. Connect CCHS families face-to-face via Network-sponsored conferences.
  4. Advocate for the CCHS community in the medical and rare disease community.
  5. Educate medical and lay community about the medical complexities of CCHS.
  6. Support CCHS research nationally and internationally via research grants.