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Author Topic: For journalists  (Read 1224 times)

GinJones

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  • Join Date: Jan 2015
  • Location: Massachusetts, USA
  • Posts: 351
  • Not a doc, just a patient
For journalists
« on: January 12, 2016, 09:52:38 PM »
If you're a journalist looking for information about XLH, we recommend:

1. Our website, xlhnetwork.org

2. Our facebook page, facebook.com/xlhnetwork

3. Our youtube channel: youtube.com/xlhnetworkincvideo

4. Our book, Weak Bones, Strong Wills, The Stories of XLH, available at all major online distributors, including Amazon: https://www.amazon.com/dp/B075MQMZXG/

5. The National Organization for Rare Diseases (NORD) page on familial hypophosphatemia, which is another name for XLH: http://rarediseases.org/rare-diseases/familial-hypophosphatemia/

6. For information about genetic transmission of dominant disorders: http://ghr.nlm.nih.gov/handbook/inheritance/inheritancepatterns

7. An overview of the condition, its causes, diagnosis and current standard of care (before burosumab), written by several of the top U.S. experts in XLH, and published in the Journal of Bone and Mineral Research, "A Clinician's Guide to X-Linked Hypophosphatemia" is here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157040/


If you would like to speak with a representative of the organization:

Executive Director: ExecutiveDirector@xlhnetwork.org
President: president@xlhnetwork.org
Treasurer: treasurer@xlhnetwork.org
Social media coordinator: Gin.Jones@xlhnetwork.org
« Last Edit: November 12, 2017, 06:03:43 PM by GinJones »

GinJones

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Re: For journalists
« Reply #1 on: November 12, 2017, 05:43:20 PM »
2018 has the potential to be a life-changing year for the XLH community. Next year may see the approval, all around the world, of the first-ever treatment for XLH (and the related hypophosphatemias) that gets at the root of the problem (phosphate wasting).

But the treatment will only help if the relevant people know about it! Our next big challenge will be to reach everyone in both the patient population and the medical community and then to educate every last one of them about the realities of living with XLH, why treatment is necessary and what the treatment options are.

At the moment, there's a huge disconnect between what the experts know and what's happening in the day-to-day treatment of XLHers by non-experts. While some medical providers are current on their understanding of XLH, there are far too many instances of uninformed medical providers telling patients that there's nothing that can be done to help them (or that their symptoms are unrelated to XLH). Some patients can challenge the bad advice, but may not be able to find any better medical provider, depending on where they live. Or they may lack the knowledge or the resources to successfully challenge their medical providers' statements.

We plan to work on both sides of those conversations. Some initiatives will focus on educating the medical providers so they'll give better advice, and other projects will focus more on educating the patient community about current options so no one will be discouraged by outdated advice.

For the health care providers side of the equation, we'll be attending more medical conferences than ever, including possible going to the meetings of the American Association of Nurse Practitioners and the American Academy of Clinical Endocrinologists; and holding a Patient-Focused Drug Development meeting (attended by a representative of the FDA) in conjunction with XLH Day 2018 (in the Baltimore/Washington area) to create materials (patient testimony and guided discussions that are videotaped and then transcribed for dissemination) about the adult symptoms of XLH.

For the patient side of the equation, we'll be creating and sharing some short videos by experts on various aspects of XLH and publishing age-appropriate materials to help children understand their XLH. Plus, as we've done for the past seven years, we'll be offering the community all the resources of XLH Day, with expert speakers and a chance to network with other XLHers and their families.

« Last Edit: November 12, 2017, 05:45:04 PM by GinJones »