Wednesday, February 4, 2015

Message from the President

The Network's Board met on Sunday to select the portions of our Strategic Plan that we intend to accomplish this year.  Here’s a bit on the priorities for 2015.

Plans are underway for West Coast XLH Day to be held on April 9-10, 2015 in Novato, California.  Watch for more details to be posted soon on our website. Ultragenyx, the pharmaceutical company leading the development of KRN23, is hosting a Patient Day on Saturday, April 11, also in Novato. Thirty travel scholarships are available for people interested in attending.  Our events coincide, so consider applying for a travel scholarship to attend both.  Ultragenyx invited other rare disease organizations, so if you are interested, please apply today:

We are joining with other rare disease groups for Give Rare Day on March 3 to promote the fact that more people are affected by a rare disease than by cancer and AIDs combined.

Our social media will increase with the creation of a YouTube channel and a way to share photographs. An upcoming website upgrade will make it easier for members to find information and support.

Our important advocacy and education efforts will continue. The XLH Network will represent our members at ASBMR (American Society for Bone and Mineral Research) and other conferences to strengthen connections to researchers and doctors.

We hope to hear from you in 2015, either in person at the West Coast XLH Day or through our virtual platforms.  Working together, we do make a difference!

Becky Mock
President, XLH Network, Inc.

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