Gratitude

The Network's Board of Directors is grateful for our members and their support (both financial and otherwise), which helps us to further our mission to promote XLH awareness and education for affected families, medical professionals, and the community at-large; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families so they can understand and cope with the complications of the disease; and to foster the search for a cure.

May you all have a wonderful day tomorrow, filled with laughter, good food and the best of times with loved ones.

Giving Tuesday: December 1, 2015

Save the Date: #GivingTuesday is December 1^st!

The holiday season is in full swing, and everyone at the XLH Network hopes that you are enjoying your holiday preparations and activities! Each year, the XLH Network asks members to consider participating in #GivingTuesday, a global day dedicated to giving back to our communities.

This year #GivingTuesday falls on December 1, 2015, and we hope you will help us use this day of giving to bring attention to the XLH Network and the families for whom we advocate. There are three ways you can help us make #GivingTuesday a success this year.

First, you can GIVE, and this year, the board of directors of the XLH Network wants to match your gifts! Various board members have agreed to combine funds in addition to their annual gifts to match up to a total of $2,000 in giving! This means that every dollar you donate on #GivingTuesday will mean an additional dollar is donated for XLH causes that will benefit XLH families! You can help double the hope!

Second, you can participate in the #unselfie movement! Take a picture of yourself holding a sign about giving to the XLH Network and plaster it all over your social media on #GivingTuesday. Use the hashtags #GivingTuesday, #UNselfie, and #XLHNetwork and show your friends and family that you are choosing to give. And for those of you who prefer not to take #unselfies, we have “I Pledged” graphics that you can use instead! You'll find them at our official Facebook page: https://www.facebook.com/xlhnetwork

Finally, you can spread the word! #GivingTuesday isn’t just about donations. Recruit at least one member of your family who is not already a member of the XLH Network and ask them to sign up! The more members we can reach, the more we can do for our entire community.

The XLH Network Board of Directors is excited about partnering with our members to celebrate #GivingTuesday. Donate at http://xlhnetwork.org/index.php/donate/, and the board of directors will match your donations up to a total of $2,000! We can’t wait to update you on our progress, so mark your calendars for December 1, 2015!

A variety of videos

Some of the videos of the Global Genes Rare Patient Advocacy Summit are available now, for those who couldn't attend in person and would like to know more about the work that patient advocates and patient support groups are doing in the complicated worlds of research, drug development, drug approval and the funding for all this work. https://globalgenes.org/2015sessionsvideos/

At our own Youtube channel, you can see the XLH Day videos from 2014 (and we're getting close to having the ones from 2015 ready for upload). In addition, we have a "playlist" with links to the "Growing Up With XLH" video and the ones from the 2013 XLH Day and Quinnipiac. Thanks to a volunteer (thank you, Ann Lewis!), we recently compiled an index to the Quinnipiac XLH Day videos (in the first comment for each of the two videos), so if you don't have time to watch the whole thing in one sitting, you can find the sections that might be of particular interest to you. The indexes even have hyperlinks to take you to the exact spot in the video! Alternatively, you can see an abbreviated index of the two videos here, to get a general idea of what the topics are: http://www.xlhnetwork.org/index.php/what-is-xlh/xlh-day/xlhday2013video

In related news, there's an interesting non-Youtube video (so we can't add it to our playlist) about an XLHer who underwent a relatively new orthopedic surgery technique (hexapod external fixator): http://www.13newsnow.com/story/news/health/2015/05/06/breakthrough-surgery-takes-beach-woman-to-new-heights/26870247/

Message from the Network President

From Network President Becky Mock: 

What an amazing year for the XLH Network! We’ve accomplished so much in 2015, thanks to your support. We've hired our first-ever employee, an administrative assistant who will assist with the daily operations, allowing Board members and volunteers to do more for Network members. We've established a template for XLH Days, which will make it possible to hold events in different locations around the United States.

Other critically important efforts included participation in patient advocacy and medical research conferences, where we met with numerous patient advocates and activists with the unified goal of educating, networking, and sharing best practices. We have been instrumental in assisting with recruiting patients for clinical trials this year and with distributing the Ultragenyx Burden of Illness Survey documenting the pain and suffering people with XLH endure every day, which has not been done at this level before. (It’s still open. Add your experience to the survey if you haven’t already: https://www.amihealthy.com/custom/ultragenyx/burdenofillness/burdenofillnesshome.aspx?SITE=XLHNETWORK.)

We are at a critical time in the growth of the XLH Network. We must be present and visible in front of leaders of the orphan drug and disease community: National Institutes of Health, pharmaceutical industry, academia, and the FDA. Current clinical research trials for children and adults may hold the key to a promising treatment. Negotiating the lengthy FDA approval process and bringing a new treatment to patients are complicated activities and take persistence. Only at national events such as those listed above is everyone brought together to discuss the best methods of researching, diagnosing and treating rare diseases in the 56 countries in which we know our members live.

We must educate more medical professionals, especially pediatricians and dentists, about the symptoms of XLH. We need to find more ways for members to meet. And finally, we need to do more as patient advocates, raising our voices so patient centered outcome studies will be a mandatory part of all work done by researchers, clinicians, and the FDA. We must work together to make this happen.

As 2015 comes to an end, please consider making a donation to our year-end campaign: http://xlhnetwork.org/index.php/donate/

Please help the XLH Network continue to work on behalf of everyone with XLH, their children, and their families. We can't do it without your help. Thank you!