Survey on Rare Disease Support Needs

Researchers at Oregon State University, in association with the National Organization for Rare Disorders (NORD) are undertaking the first large-scale study about the information and psychosocial support needs of people living with rare disorders.

Obviously, the more responses they can get, the better the resulting data will be, and the more they can learn from it. If you'd like to participate, you can take a 40-minute online survey here: http://oregonstate.qualtrics.com/jfe/form/SV_7VEgG8kwTizenAN

If you're interested, do it now. The survey will be closing soon (possibly as early as Saturday, April 1). 

Note that to be eligible for the study (and focus group), you must be 18 or older, able to communicate in English and have a rare disease or disorder (not just be  the parent of someone with a rare disorder). XLH (and the related autosomal hypophosphatemias and TIO) qualify as rare disorders, since it's estimated that around 15,000 people in the United States have XLH (and the other conditions are even more rare). 

And for XLHers in the UK, Spain, Italy, France, Netherlands, Germany, Denmark or Norway ONLY:
The James Lind Alliance is looking for help in identifying identify unanswered questions about XLH and two other rare disorders in adults. To share your thoughts:
http://www.ouh.nhs.uk/research/patients/priority-setting-partnerships/musculoskeletal-rare-diseases/

The XLH Network, Inc. does not endorse or critique specific research projects, and does not counsel individual patients either for or against participation in any specific research. Prospective volunteers should always carefully review the informed consent documentation, and discuss the pros and cons of their participation with trusted advisers.

Sharing your experience with health insurance

The Collaborative on Health Reform and Independent Living (CHRIL) is a 5-year research project funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to study how health reforms affect working-age adults with disabilities. The CHRIL is currently looking for individuals with disabilities to participate in their research efforts.

During the months of April through July, CHRIL staff from the University of Kansas will be interviewing 20-25 adults (age 18 to 63) with disabilities across the US about their experiences using and getting health insurance and/or Medicaid and Medicare. Participants completing an interview will each receive $40. 

For more information: http://www.chril.ilru.org/participate 

Or contact by email: healthsurvey@ku.edu

Catching up

There's been so much happening lately, and some topics have been piling up, so here's some short snippets of information to get us all caught up.

First, there's an online survey for research at the University of Rochester (New York) on "Understanding and overcoming obstacles to participation in clinical research for patients with rare diseases." If  you'd like to share your thoughts on the issue, you can complete the survey here: https://redcap.urmc.rochester.edu/redcap/surveys/?s=PE9AWFM48K

For new members who haven't heard about it yet, if you'd like to share your thoughts and experiences on research that's more specific to XLH, you can do the Burden of Illness survey here: https://www.amihealthy.com/custom/ultragenyx/burdenofillness/burdenofillnesshome.aspx?SITE=XLHNETWORK Note that it's now available in a variety of languages: English, French, Portuguese and several versions of Spanish.

And finally, a reminder that the Global Genes Patient Advocacy Summit is happening tomorrow and Friday. If you'd like to watch the livestream to better understand what you can do to advocate for yourself, and what the Network's board is doing on your behalf, you can register here: https://globalgenes.org/2015summit/ Our president, Becky Mock, will be attending the summit, and we hope to have some pictures at our official Facebook page, facebook.com/xlhnetwork

One of the speakers is Pat Furlong, the CEO of Parent Project Muscular Dystrophy (Thursday, 9 a.m. California time, noon Eastern time), and I (Gin Jones) can tell you she's amazingly inspiring. She spoke at a workshop I attended last week, and I'm still thinking about some of the things she said, like how patient advocates need to find innovative ways to "quantify the patients'/caretakers' tears," putting the suffering into a format that researchers and funders and the FDA can understand.

XLH Network Survey

The XLH Network is currently in a year-long process of working to grow our organization and better meet the needs of the XLH community. As part of our initiatives, we have designed a survey in hopes of getting feedback from our members. Your feedback is invaluable, and it will allow us to think strategically about how to best advocate for XLH patients and families.

You can reach the survey through the following link:

  https://www.surveymonkey.com/s/XLH_Network

We expect the survey to take no more than fifteen minutes of your time, and we appreciate your input!