R.A.R.E. Blog is a Place for Families Affected by Rare Childhood Diseases to Learn and Share Resources.
Dana Point, Calif. (June 9, 2010) – For the approximate 22.5 million families with children affected by rare disease, a place to find and broadly share information with other affected families is vital. The Children’s Rare Disease Network (www.crdnetwork.org) , a non-profit advocacy group committed to connecting, educating and empowering the rare disease community, has launched the R.A.R.E. blog at RAREproject.org/blog to provide that essential hub for parents, children, siblings, clinicians and other rare disease stakeholders.
“The R.A.R.E. Blog is an important part of improving the lives of these children and their families who are affected by rare disease,” said Nicole Boice, founder and president of the Children’s Rare Disease Network. “The blog provides an online forum where diverse people come together to share resources, expertise and help provide support so that each family never feels isolated, alone or uninformed.”
Bloggers provide valuable insight into a myriad of issues affecting children with rare diseases, posting on a wide range of topics. Parents who’ve lived through the day-to-day aspects of raising a child with special needs share stories, post notices, celebrate successes and ask for support when needed. Health care experts provide detailed analysis of rare disease policy as well as calls to action on pending legislation. Parents and health advocates discuss best practices and standards of care on the blog and provide a much-needed forum for families to become educated about the daily challenges of dealing with rare diseases. Siblings of children with rare diseases have even blogged about the unique challenges they face living with a brother or sister with a rare disease, providing valuable insight for other families.
Geeta Nayyar, M.D., is Principal Medical Officer at Vangent Inc. where she provides her expertise in clinical medicine, health policy, medical communications and public health to her role of directing innovative health information management and technology solutions. She is also an Assistant Clinical Professor of Medicine in the Department of Rheumatology at the George Washington University, and is a physician contributor who has appeared on ABC News to raise awareness for World Rare Disease Day. Catherine Calhoun, J.D., who has a son with a rare condition, will also serve as a blog contributor. She voluntarily manages the R.A.R.E. blog and will bring the message of rare diseases to the Personal Democracy Forum conference in June 2010 and to the BlogHer conference in August 2010. In addition, Karen Owen, co-founder of Chronically Cool Families, a parent-to-parent support group for families dealing with chronic illness and disability after she lost her son, Gavin, at age three after a lifelong battle with Mitochondrial Disease, will provide blog content. Rounding out contributors is Howard Leibers, who has worked in health policy within various government and advocacy groups throughout his career. As founder of the blog MarbleRoad, Leibers frequently writes about rare disease issues and community health with an emphasis on health policy.
Providing a dynamic online arena where people can come to learn about living with rare diseases and ultimately make life better for children and families, the R.A.R.E. blog welcomes guest contributors and subject matter experts who can write about topics important and relevant to this community.
About the Children’s Rare Disease Network
The Children’s Rare Disease Network (CDRN) is a non-profit advocacy group committed to connecting, educating and empowering the rare disease community. Providing a link between families going through the pain of a child with a rare disease, the CDRN is a division of and developed by The R.A.R.E. Project which exists to promote rare disease advocacy. For more information, visit www.crdnetwork.org.