Partner Spotlight: National Osteoporosis Foundation

We spoke recently with Jill Ryan, Director of Communications and Marketing at the National Osteoporosis Foundation, about NOF its use of the NOF Inspire community. Here are excerpts of the interview:

Tell us about your organization and its mission.

Ryan:The National Osteoporosis Foundation is the leading consumer and community-focused health organization dedicated to the prevention of osteoporosis and broken bones, the promotion of strong bones for life and the reduction of human suffering through programs of public and clinician awareness, education, advocacy and research.

Why did NOF decide an online support community would help its constituency?

Ryan: There's an estimated 44 million Americans who have osteoporosis, or who are at risk for it. We felt we needed to have a forum for people to talk with one another. Everyone's experience is different and as a foundation, we felt it would be a benefit to give our members a place to talk with each other, to share experiences, and to really connect with someone who is going through the same experiences.

What do you see as the real value of the connections that NOF members make online?

Ryan: For some people who have lost some independence and mobility due to osteoporosis, who may be homebound, this connection that we provide them may be the primary source for them to connect with other people. If they don't have as severe a diagnosis, it's still a great way for them to talk to somebody that's going through the same thing. As an organization, we pride ourselves on being the patient's voice, then we have give those patients a way to talk to each other. The value of it for us is huge.

Do you use the Inspire community as a way to determine what topics are important to your members?

Ryan: Absolutely. It's a great way to keep our finger on the pulse of what our members are interested in. It has become a vehicle for us to consider what content we should develop for our own Web site, and what content we should consider for some of our own marketing resources. It's a great way for us to get some intelligence as to what's on people's minds.

How do you see the community and other social media efforts impacting the work your organization does in the future?

Ryan: I look at this community as part of our grassroots manpower. It's an extension of our voice. I look at all of our social networks, especially Inspire, as a way for us to get out more messaging to the people we want to share our education with. A lot of people consider word of mouth to be one of the top ways they get health information, and what better way to do that than through social media?

Interview edited for space. If you'd like to nominate an association for the Partner Spotlight feature, contact Inspire's Communications Director, John Novack.

How Inspire Can Help You Leverage Social Media

Are you on Twitter and Facebook? Look to Inspire to extend your outreach in social media. Inspire is on Twitter as @TeamInspire. Follow us, and we'll follow you back. We're tweeting news and analysis into topics related to epatients and ehealth, and we'd be happy to periodically retweet news from your organizations.

Connect with Inspire on Facebook as well and we'll share your news with Inspire's Facebook followers.

We just created a list on of Inspire's partners on Twitter. Click here to review the list, and follow the Twitter list to stay up to date with social media efforts of your peers. If you're on Twitter but not on this list, please let us let us know. For more information about ways we can help you in your social media efforts, please contact Inspire's John Novack.

Tech Tidbits: SEO Resources, by Walter Wlodarczyk, Chief Technology Officer, Inspire

SEO (short for search engine optimization) comprises a wide variety of techniques used to make Web sites findable and highly ranked in search engines like Google, Yahoo! and Bing. SEO includes everything from fundamental business decisions such as what your site is about, to technical considerations like the software that powers it.

Whether you're a rookie or veteran, Search Engine Land is a great news and information Web site to read about SEO and search engines in general. Tech writer Danny Sullivan oversees the site, which includes a great collection of resources on search. Many resources on the site are free, and some are available via subscription. The SEO resources focus on ethical--or "white hat"--search engine optimization techniques, which abide by search engine guidelines. There is also a "black hat" SEO community to steer clear of. Black hat SEO practitioners employ unethical techniques that are contrary to search engine guidelines, and result in penalties from search engines when detected.

Google itself offers some useful information on search, such as this primer.

Inspire communities rank highly for many search terms. This is due in part to the effort we put into the technical aspects of SEO, but, more importantly, because our communities are full of engaged members who contribute valuable, authentic content. Because our communities are linked under the inspire.com domain, our partners share in the benefits of our search engine prominence.

If you have ideas for future columns, email me at walter@inspire.com.

Inspire in the News

• In mid-December, consulting firm Deloitte featured Inspire prominently in a research report titled, "To friend or not? New insights about social networks in the life sciences industry."
• Danielle Leach, Inspire's Director of Partnerships, was an invited attendee to a December meeting of the National Cancer Institute, which convened a session to examine the study of rare cancers. NCI brought together multiple international stakeholders including representatives of the NIH and NCI-sponsored Clinical Trials Cooperative Group Program to consider when international trials might be appropriate for studying rare cancers, and to develop a systematic approach to prioritize such trials. Danielle is a pediatric brain cancer advocate and an activist with Children's National Medical Center and Childhood Brain Tumor Foundation.
• Inspire CEO Brian Loew was a featured speaker at two recent conferences, Health 2.0 in San Francisco and the DTC fall marketing conference in New Jersey. Brian recently wrote guest columns for KevinMD and the Detroit Free Press. Brian will also be profiled soon in the Health Business Blog, by David E. Williams.
• Inspire has been featured recently in several media outlets, including three pieces by ABC News: Social Network Makes Rare Diseases Not So Hard to Find; Prosthetics Become Source of Shame at Airport Screenings, and Jim Stanicki: An Online Inspiration on Dying Well. Also, patient advocate and writer Trisha Torrey mentioned Inspire in a recent blog posting, His Life's Calling is Dying.

Newest Inspire Communities Announced

We are proud to announce the following new communities:

Tuberous Sclerosis Alliance
Georgetown University NICU
ThyCa: Thyroid Cancer Survivors Association

Welcome to our community of communities!

If you are interested in starting a community, please contact Amir Lewkowicz.

About Inspire

Founded in 2005, Inspire is the leading provider of online patient community solutions. Inspire provides safe, secure, and engaging online communities for patients, their caregivers, and their families, through collaborative technologies. By enabling those affected by medical conditions to seek out and help one another, Inspire fosters vibrant, effective, and close-knit social networks. For additional information, please visit www.inspire.com. Contact us at team@inspire.com.