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Be an online advocate

A question I always get from members is, how can I volunteer to help the HPS Network? One way anyone with an internet connection can help is to be an online advocate. Today’s world is an online world. Getting noticed isn’t as much about the actual number of people affected by HPS as much as it is about how engaged those of us with HPS are online and on social media. We can exercise as much muscle as some of the “big charities” if we are better at mobilizing our population. You’d be surprised how some of the little things you can do every day will help the HPS Network. Here’s a list of ways you can help online.


1. Share the HPS Network Website, www.hpsnetwork.org. Search engines crawl the internet and rank Websites based on a number of factors. One of the factors is how many other places and Websites offer a link to the HPS Network site. If you have a blog, please mention the HPS Network Website whenever you can. List it on your blogroll. If you’re posting to twitter or facebook, please make a point of posting the Network’s Website from time to time. It will make it easier for those who might suspect they have HPS to find us.

2. Visit the HPS Network Website. We are often updating the news on the site. Please stop by and maybe read an article. Many grant applications are interested in our Web traffic numbers.

3. Visit the HPS Network facebook page. Grants are also often now asking about our social media participation. Make a point of stopping by the HPS Network facebook page. Do something while you are there such as liking or sharing a post. It’s not enough to have traffic. We need to prove that we engage the traffic.

4. Do you tweet? If you’re on twitter, subscribe to the HPS Network’s twitter feed. Favorite or retweet posts whenever you can. This generates more activity for our hashtags, which gets us noticed more.

5. Participate in online forums related to albinism or pulmonary fibrosis. We have to brand ourselves as people with Hermansky-Pudlak Syndrome. Introduce yourself as having the HPS type of albinism. Or, introduce yourself as being affected by pulmonary fibrosis because of Hermansky-Pudlak Syndrome. This will help us to be “seen” and branded in places where those who may have HPS, but don’t know it, are likely to turn up. It won’t be uncommon that people won’t know what Hermansky-Pudlak Sydrome is and they’ll ask you. It’s a great way to be invited to explain HPS.

6. Engage your social network in the cause. We can expand our reach tremendously if we can get our relatives and friends to visit the Website, facebook page or retweet our messages.

7. Share your story online. Our effort to try to get to be a featured non-profit on the Today Show has been a great education. As people have tweeted reasons why the HPS Network should be featured, they’ve shared pieces of their story in just 140 characters. We have powerful stories to share. People feel more connected to other people than they do to an organization, no matter how great the organization may be. If you are able to share about your participation in the HPS Network as you share your HPS story, you’ll not only help outreach for HPS awareness, but you’ll help people understand why supporting the HPS Network is such a special thing to do.

None of these actions takes a lot of time or effort. If you’re already paying for your internet connection, they’re also free. These actions are a way you can help fund the HPS Network by helping us with grant applications. They are a way you can help someone else with HPS with your words, wisdom and stories. Let’s pitch in, blog, post and tweet for the cure!

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