The Children’s Rare Disease Network is a community built by parents of children with rare disease for parents of children with rare disease. It is with this in mind, that we are working to provide many different opportunities for parents to engage, collaborate and join a greater cause. Consider this your site, become an advocate and let’s all work to make an impact today!

Represent The Project – The Children’s Rare Disease Network in your community

• Outreach to other rare disease families within the community, encourage families to register on site
• Promote The Networks events and programs
• Available: Become part of the M.O.M. and D.A.D. advocacy teams – create a business card, buy a shirt

Create rare disease Parent Advocacy Groups within your city

• Provide much needed support
• Share information and identify resources
• Build local programs and outreach in community
  (walks, runs, concerts, etc)

• Help maintain State Resources within network, ensure that resources are current
• Update The Project Library on rare disease information
• Be a Wikipedia Advocate and keep updated on relevant rare disease information and ensure that every disease has The Project – The Children’s Rare Disease Network as a resource/link

• Broad issues are shared by all families with rare disease
• Become a Parent Advocate blogger and represent disease, or share experiences on a particular topic

• Ensure that ‘I care about Rare’ tags and widgets are posted on all our partners sites
• Help initiate discussions with potential online partners
• Help drive the Facebook campaigns and programs – goal of 1 million members
• Spread the word