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Black Friday. Cyber Monday. Giving Tuesday! A life changing 2018!
For those living with XLH, 2018 brings the possibility of the first ever treatment that specifically addresses the underlying cause of XLH - phosphate wasting. This is very exciting news indeed, but it is news that makes the work of The Network that much more significant.
As the possibility of this new treatment comes to fruition, we are committed to ensuring that clinicians across the globe understand XLH, know the symptoms and causes, and know how to properly diagnose and treat it, early. For patients living with XLH and for their caregivers, we are equally committed to helping you understand XLH, providing you the resources and tools you need to effectively advocate for yourself or your loved ones, and providing ongoing education to help you manage XLH throughout your life. We are also committed to advocating on your behalf to ensure that everyone will have access to treatment.
Since 1996, The XLH Network, Inc. has been the voice of patients worldwide. We have grown as an organization from an initial online support group to a respected organization representing the interests of the XLH community globally. With life changing events promised in 2018, having adequate resources to address all of our needs is more important than ever.
This GivingTuesday we are asking you to join our efforts by being a GivingTuesday Ambassador. It's simple to get involved. Here is all you have to do:
1) Register as a GivingTuesday Ambassador
2) Create a personal fundraising page and set a goal. We suggest a minimum of $200 but you can set your own goal! Why not shoot for the stars!
3) Personalize your page with your story and let people know why The Network is important to you.
4) Add pictures and video as a way to make it stand out!
5) Share it with your network - family, friends, co-workers, civic or religious organizations that you may belong to, your neighbors, or anyone else you can think of and ask them to support you!
We have set a goal of $10,000 for our GivingTuesday campaign. We know we can meet it with your help! Funds raised will help us accomplish so much in the year ahead including:
* Hosting an externally led Patient Focused Drug Development Meeting that will provide a patient voice statement to the FDA as they continue review of a promising new treatment
* Hosting our 8th annual XLH Day that will bring experts together with patients, family members and care givers, offering an opportunity for connecting with others and learning in a warm and supportive environment
* Development of children's materials that will help kids living with XLH understand it a little more
* Educating clinicians on the proper and early diagnosis and treatment
* Expanding patient support services
And so much more! Your help is needed now more than ever. Together we can have a life changing impact and prepare for all the possibilities that 2018 may bring!
Thank you for your support!
PS We have even more exciting news! Our Board of Directors has rallied! During GivingTuesday there will be a match available both for recurring donors and GivingTuesday donors! You have the potential to double your impact, so don't delay!
Disclosure: A copy of our latest financial report, the registration filed by this organization and a description of our programs and activities may be obtained by contacting us at The XLH Network, Inc., 911 Central Avenue, No. 161, Albany, NY 12206 or by calling 518-527-6236. You may also obtain information upon request from the Attorney General Charities Bureau, 102 Broadway, New York, NY 10271.