Sale on 2024 Calendars!

This past summer, children who attended XLH Kid's camp created artful masterpieces for a 2024 calendar. Order yours today for just $20.00, $15, or $10 if you buy 5 or more!

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About Us

In 1996 a college student in Minnesota connected online with a man in England whose wife and children have XLH, and with a man in British Columbia whose son had a spontaneous case. All of them were looking for help on the internet, and from this connection The XLH Network was founded as an international volunteer group of people affected by or interested in XLH, or X-Linked Hypophosphatemia. Today we’re incorporated as a 501(c)(3) tax-exempt charity – making all donations tax deductible to the fullest extent allowed by law. We are the first organization in the world specifically dedicated to XLH.

The XLH Network is helping thousands of people around the world who are affected by or interested in XLH and related disorders of phosphate wasting. Our website provides information to people around the world with up-to-date information on diagnosis, treatment and the very latest research. XLH Network membership is growing daily, and members have available to them a variety of tools that help connect patients with each other, as well as with clinicians and researchers.

OUR MISSION

The mission of the XLH Network is to promote XLH awareness and education for affected families, medical professionals, and the community at-large; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families so they can understand and cope with the complications of the disease; and to foster the search for a cure.

Leadership

SUSAN FAITOS, M.A., L.M.F.T.

SUSAN FAITOS, M.A., L.M.F.T.

EXECUTIVE DIRECTOR

Susan has spent over thirty years in the social work and mental health fields working primarily with nonprofit, community-based organizations. She has been a familiar face at Network events since 2015; first as a member, then a volunteer. She became a board member in 2018 and then took on the role of Executive Director in 2019. We are grateful that she chooses to contribute her wealth of experience in the nonprofit world to the Network and our community. Susan was diagnosed with XLH at eighteen months of age, so she also brings a lifetime of understanding to the position. She resides in sunny California and can often be found either at the beach or among the redwoods.

We continue to grow and to commit to our community of patients under Susan’s leadership. You can reach her at ExecutiveDirector@xlhnetwork.org.

JOBETH SOUZA

JOBETH SOUZA

PRESIDENT

JoBeth lives in North Carolina with her two children, one of whom has a spontaneous case of XLH. She has used the Network as a resource for the past many years and this was her motivation for becoming a board member. Currently working as a Wealth Management Advisor, JoBeth’s other activities include dance classes and piano lessons. She also volunteers in her community, at her church, as well as her children’s schools.

SHANNON SHARP

SHANNON SHARP

VICE PRESIDENT

Shannon has been a long-time advocate for families living with XLH. Her goal is to help others connect and support each other. She recently retired as an office manager for a physical therapy company after 22 years of service. In her retired life, she enjoys traveling, camping with her family, visiting the beach and meeting new XLH Network members and offering support and resources.

SARAH DAS

SARAH DAS

TREASURER

Sarah has a daughter with a spontaneous case of XLH. She feels fortunate that she was able to get her daughter diagnosed and treated early in her life, and her goal as a board member is to reach out to other families and advance awareness and education of XLH . Her professional background is in corporate finance, and she volunteers in her community as a softball coach, at her children’s school, and at various military veteran’s events. She resides in Connecticut with her husband and daughters.

CHARLES POMEROY

CHARLES POMEROY

SECRETARY

Charles is excited to serve his first term on the Board and to contribute his diverse skills and talents to further the mission of the XLH Network. He discovered the Network when his child was diagnosed with a spontaneous case of XLH and has since become a familiar face behind-the-scenes at many XLH Network events, including the very first XLH Day held in 2011. With a background in systems and organizational development, communications, and technology and a passion for helping others, he is committed to helping the Network’s continued growth and success in achieving its goals.Charles resides in Connecticut with his wife and teen. When not working with the Network, he is a clinical case manager with a non-profit agency serving the adult mental health community.

SUNINDIYA BHALLA

SUNINDIYA BHALLA

Sunindiya’s skills from working in the nonprofit world for many years – including fundraising, policy, and impact work – help to ensure the growth and ongoing success of the Network. She is particularly interested in ensuring that teens and young adults – especially those with spontaneous XLH – have strong support in their journey into adulthood. Besides working and volunteering her time, she loves going to the beach, relaxing on her porch with coffee and a good book, and spending time with her mom. She is also hoping to adopt a baby sometime in the near future.

MARIAN HART

MARIAN HART

Marian is from Zionsville, Indiana and is currently Clinical Research Leader at Indiana University Division of Endocrinology where she has been since 2002.  She began working with XLH patients around 2010.   During this time she has learned so much from her patients and colleagues across the world. She believes that knowledge is power and that education of patients and family regarding their condition is a top priority. Her spare time is taken up with two teenage boys.

ELIZABETH OLEAR

ELIZABETH OLEAR

Elizabeth originally joined the Network shortly after accepting a position in Pediatric Endocrinology at the Yale Center for XLH where she is currently the Senior Clinical Research Associate. She founded XLH Day in 2011 to give patients and their families the opportunity to meet each other and to improve education and awareness for the disorder. She is originally from Connecticut, attended college and graduate school in and around Boston, and currently resides in Connecticut. Her hobbies include yoga, travel, cooking and reading.

KELLY RUSHING

KELLY RUSHING

Kelly Rushing is serving her first term as a board member but has been involved with the XLH Network for several years as a volunteer.  She has a multi-generational family of others who have XLH, just like her. She loves creativity,  public speaking, and people. Kelly lives in East Alabama with her husband and four dogs. She will be pursuing a degree in human resources with an emphasis on communications soon.

ALY WAY

ALY WAY

Aly Way is a remarkable individual who has shown incredible strength and resilience in her journey living with XLH  and advocating for the XLH community throughout her lifetime. Born and raised in San Antonio, Texas, Aly works to raise  awareness and promoting understanding about XLH.  As a hereditary case of XLH, Aly is a 4th generation XLH-er and has faced unique challenges and obstacles. However, she has never let her condition define her or limit her aspirations. In her work life, Aly runs a design center where she showcases her creativity and passion for home design and organization. Her dedication and talent have made her a respected professional in her field.  Despite her busy schedule, Aly always makes time for what truly matters to her – her family and her beloved dog, Pearl. Aly’s positive and joyful spirit is contagious, and her loved ones treasure the happiness she brings into their lives.

JAYLA KLASE

JAYLA KLASE

Jayla currently lives in Lebanon, Pennsylvania with her fiancé and their cat. She graduated in December ’23 from Shippensburg University with a dual major degree in Early Childhood Education and Special Education. She is currently employed as a substitute teacher, and hopes to gain her very own classroom next school year! In her free time she loves to volunteer at community events, travel, and spend time with her family. Her mother has XLH, and it can be tracked back three generations to her great-grandmother. The network has brought a lot of comfort and happiness to not only Jayla, but her whole family, helping them to feel like they aren’t alone. Since the XLH Network has done so much to help Jayla and her family, she felt the desire to be a part of the Network so that she is able to help others and to spread education as well as awareness about XLH! 

CHRISTI LINDH

CHRISTI LINDH

Christi is excited to join the board after first being introduced to the XLH Network in early 2021. She quickly became personally invested in the community and plans to use her experience in patient advocacy to continue to ensure the patient and caregiver voices are heard. She became passionate about rare diseases after the adoption of her son, Jaxon, in 2016, not knowing much about his genetic history. Christi and Jaxon reside in a small town north of Chicago along with their beloved pets. Besides her work in patient advocacy, Christi enjoys volunteering with a local animal rescue organization. There, she serves as a photographer, taking pictures of the animals in hopes of helping them find their forever family.  Christi is looking forward to meeting many more members of the XLH community and working to create greater awareness of the condition.

REBECCA FIELDS

REBECCA FIELDS

Becky lives in Bargersville, Indiana. Her husband and at least 6 generations of his family have XLH. The XLH Network has guided her and her husband to many resources for those with XLH but also to a community of friends. This motivated her to want to volunteer and help others learn about the community of support available. Becky works for a medical insurance company as a Regulatory Affairs Manager and has been in the insurance industry for 24 years. She volunteers in the nursery at her church and her hobbies include scrapbooking, board games and sewing purses and bags.

A Worldwide Patient Support Organization for People Living and Dealing with X-Linked Hypophosphatemia (XLH)

SCIENTIFIC ADVISORS

CAROLYN M. MACICA, PH.D.

SCIENTIFIC ADVISORY BOARD CHAIR

Frank H. Netter School of Medicine, Quinnipiac University
Joint appointment at Yale University School of Medicine

THOMAS O. CARPENTER, M.D.

Yale University 

MICHAEL ECONS, M.D.

Indiana University

SUZANNE JAN DE BEUR, M.D.

Johns Hopkins University 

PETER S. N. ROWE, PH.D.

The Kidney Institute & Division of Nephrology
University of Kansas Medical Center

RAGHBIR KAUR, DMD

Assistant Residency Director

Pediatric Dentistry
NYU Langone

MAYA HELENE DOYLE, PHD, LCSW-R

School of Health Sciences, Quinnipiac University

ERIK IMEL, M.D.

Indiana University

Contact Us

The XLH Network, Inc.
911 Central Ave., #161
Albany, NY 12206

518-350-9541
info@xlhnetwork.org

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XLH Network

A Worldwide Patient Support Organization for People Living and Dealing with X-Linked Hypophosphatemia (XLH)

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