Tuesday, February 24, 2015

Give RARE Day

Rare Disease Day (February 28) is mostly about bringing attention to all of the diseases and their impacts. New this year is a related fundraising day, Give RARE Day, on March 3. The event was designed to acknowledge that more people are directly affected by a rare disease, more than the number of cancer patients who get more attention and research dollars.

The Network is participating in this first-ever Give RARE Day, primarily to raise funds for the next XLH Day (after the West Coast event on April 9-10). You can find our page here: http://giverare.razoo.com/story/Xlh-Network

We've heard from a number of our members that they would like to see more XLH Day events in more locations. We can't do that with our currently available funds or the amounts we expect to receive in our year-end funding. We can only host more events if we have additional funding and support from our members.

If you'd like to contribute to a fund for the next XLH Day (or other Network programs), Give RARE Day is an opportunity to do just that. There are a few ways you can help. First, you can make a donation yourself on March 3rd, which could make us eligible for additional funds from corporate sponsors. Second, you could simply spread the word on social media, using the #GiveRARE and #XLHNetwork hashtags on March 2 and 3. And finally, if you've ever wanted to hold your own fundraiser for the Network, but didn't know where to start, you can do it easily using the Give Rare platform.

To set up your own crowdsource-fundraiser connected to Give RARE Day, just go to our page, and you'll see an option to "fundraise for this cause." If you click on that link and set up an account, the money you raise by sharing your page with your contacts will go to the XLH Network, Inc., without your having to manage it yourself.

The platform is full of useful hints for setting up your page, and when you sign up, you'll get an email with some suggestions for spreading the word about Give RARE Day (like putting the link to your page in your email signature line and on your facebook profile!), a lot of which is automated. You can also see examples of individual pages set up by Board members (and at least one other volunteer at the time this post was written) at the XLH Network's Give RARE page. It only takes a few minutes, and if you get stuck, the platform's support team can help you (they're excellent, and should be able to answer all your questions if you send an email to support@razoo.com).

Wednesday, February 18, 2015

West Coast XLH Day

Please save the date so you can join us for West Coast XLH Day on April 9-10, in Novato, California, to meet other families dealing with XLH, discuss the challenges, learn how others cope, and develop new strategies for managing your own or your child’s symptoms.

Due to a generous educational grant from Ultragenyx Pharmaceutical, the XLH Network will be offering a casual mixer as people arrive at the Best Western Plus, Novato, California, on Thursday, April 9th, and then educational and social programs for both adults and children of all ages on Friday, April 10th at the Unity in Marin campus in Novato, CA. The grant also enables the Network to reimburse up to thirty families for at least a portion of their hotel costs, the details of which will be provided when registration opens.

Guest speakers will include Anthony A. Portale, M.D.,  and Network Scientific Advisory Board member, Carolyn Macica, PhD. More program details will be announced shortly before registration opens.

Registration will begin March 9, 2015, at xlhday.com, and end on March 30, 2015. Please do not try to register until there is an official announcement that the site is ready or your information may be lost, and advance registration is required for admission to the event. You must be a Network member to attend, but joining is free. Just go to XLHNetwork.org, click on "become a member," and follow the links. Please note that it may take 24-48 hours for your membership to be activated. 

We look forward to greeting old friends and making new acquaintances!

Wednesday, February 11, 2015

World Rare Disease Day

The last day of February is World Rare Disease Day, which is intended to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

World Rare Disease Day is, as its name suggests, a global undertaking. It was founded in Europe, and now there are at least 84 countries participating.

In the United States, Global Genes has a week of activities in the D.C. area, and other local organizations have them scheduled through the country.

To look for an event near you, start here: http://www.rarediseaseday.org/events/world and then click on  your country.

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: http://events.r20.constantcontact.com/register/event?oeidk=a07ea1v5hyo78a40bff&llr=orxhodsab

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.