The XLH Network, Inc.

The XLH Network, Inc. The Official page of The XLH Network, Inc. X-Linked Hypophosphatemia (XLH) is an x-linked dominant condition that causes rickets and osteomalacia that does not respond to standard vitamin D therapy.

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 in November, 1996 as an international volunteer group of people affected by or interested in XLH, or X-Linked Hypop

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 in November, 1996 as an international volunteer group of people affected by or interested in XLH, or X-Linked Hypop

Operating as usual

It's been a little quiet around here this week, but trust we are busy behind the scenes, getting ready for tomorrow. If ...
10/15/2021

It's been a little quiet around here this week, but trust we are busy behind the scenes, getting ready for tomorrow. If you haven't registered already, it's not too late! We would love to see YOU! https://us02web.zoom.us/webinar/register/WN_f1j4Ics5T4-KOw9TcEqY7Q

It's been a little quiet around here this week, but trust we are busy behind the scenes, getting ready for tomorrow. If you haven't registered already, it's not too late! We would love to see YOU! https://us02web.zoom.us/webinar/register/WN_f1j4Ics5T4-KOw9TcEqY7Q

We are offering a variety of breakout sessions for Saturday's Virtual XLH Day. Which one speaks to you? Shout out in the...
10/12/2021

We are offering a variety of breakout sessions for Saturday's Virtual XLH Day. Which one speaks to you? Shout out in the comments if you know which one you're planning on attending. And don't' forget to register: http://ow.ly/8DpM50GpUIm

We are offering a variety of breakout sessions for Saturday's Virtual XLH Day. Which one speaks to you? Shout out in the comments if you know which one you're planning on attending. And don't' forget to register: http://ow.ly/8DpM50GpUIm

Our former Executive Director Rachael Jones has some exciting news....and we couldn't be happier for her! Congratulation...
10/07/2021

Our former Executive Director Rachael Jones has some exciting news....and we couldn't be happier for her! Congratulations, Rachael!

"Those of you closest to me know that I have always wanted to write a children's book, and for quite some time I have talked about writing a children's book about XLH. This year I decided to actually make this happen! I wrote this book and worked with an amazing illustrator who brought the characters to life. I will be releasing this book on Amazon on October 15th! #xlh #maxandmilobook"

Our former Executive Director Rachael Jones has some exciting news....and we couldn't be happier for her! Congratulations, Rachael!

"Those of you closest to me know that I have always wanted to write a children's book, and for quite some time I have talked about writing a children's book about XLH. This year I decided to actually make this happen! I wrote this book and worked with an amazing illustrator who brought the characters to life. I will be releasing this book on Amazon on October 15th! #xlh #maxandmilobook"

Let's contribute to this important project by the International XLH Alliance!What does receiving your best care mean to ...
10/05/2021

Let's contribute to this important project by the International XLH Alliance!

What does receiving your best care mean to you? Does it mean you can now do more with your family? Are you better at sports? Does it mean that you're in less pain that you can now go on a hike? Or go shopping 🙂 We would love to hear from you! Share with us what receiving your best care means to you! You can post your picture on Instagram and tag us with @xlhalliance. Use these hashtags in your picture description: #ShowYourBestCare #MyBestCareWithXLH #AccessYourBestCare
You can also participate by uploading your photo directly to us with a short description via this link: https://xlhalliance.org/BestCare/
All entries will be published by the International XLH Alliance via Instagram & Facebook between Oct. 16 to Oct. 22. The deadline for entries is Oct. 22.
Be a part of the Access Best Care Campaign this year for Int. XLH Awareness Day on October 23 2021, we look forward to seeing you!

Let's contribute to this important project by the International XLH Alliance!

What does receiving your best care mean to you? Does it mean you can now do more with your family? Are you better at sports? Does it mean that you're in less pain that you can now go on a hike? Or go shopping 🙂 We would love to hear from you! Share with us what receiving your best care means to you! You can post your picture on Instagram and tag us with @xlhalliance. Use these hashtags in your picture description: #ShowYourBestCare #MyBestCareWithXLH #AccessYourBestCare
You can also participate by uploading your photo directly to us with a short description via this link: https://xlhalliance.org/BestCare/
All entries will be published by the International XLH Alliance via Instagram & Facebook between Oct. 16 to Oct. 22. The deadline for entries is Oct. 22.
Be a part of the Access Best Care Campaign this year for Int. XLH Awareness Day on October 23 2021, we look forward to seeing you!

We've finalized our rich agenda for this year's virtual XLH Day. Have YOU registered yet?  http://ow.ly/1eEh50GkU4G
10/03/2021

We've finalized our rich agenda for this year's virtual XLH Day. Have YOU registered yet? http://ow.ly/1eEh50GkU4G

We've finalized our rich agenda for this year's virtual XLH Day. Have YOU registered yet? http://ow.ly/1eEh50GkU4G

Maya Doyle is a member of our Scientific Advisory Board: https://www.qu.edu/quinnipiac-today/social-work-professor-pursu...
09/30/2021
Social work professor pursuing greater understanding of rare disease

Maya Doyle is a member of our Scientific Advisory Board: https://www.qu.edu/quinnipiac-today/social-work-professor-pursuing-greater-understanding-of-rare-disease-2021-09-21

At Quinnipiac, we provide the knowledge and resources you need to make a tangible impact on your chosen field. Through a combination of classroom theory and practical experience designed for you to succeed, you'll experience the life-changing opportunity of working and learning in the community and....

You asked, we answered. Drs. Thomas Carpenter and Karl Insogna answer your questions about the Covid vaccine and XLH : h...
09/24/2021

You asked, we answered. Drs. Thomas Carpenter and Karl Insogna answer your questions about the Covid vaccine and XLH : https://youtu.be/BAWqPytfyXo

You asked, we answered. Drs. Thomas Carpenter and Karl Insogna answer your questions about the Covid vaccine and XLH : https://youtu.be/BAWqPytfyXo

We are up to year 2013 in our journey through the Network's history. Did you attend this event? We'd love to hear about ...
09/20/2021

We are up to year 2013 in our journey through the Network's history. Did you attend this event? We'd love to hear about it in the comments below!

We are up to year 2013 in our journey through the Network's history. Did you attend this event? We'd love to hear about it in the comments below!

It's the last weekend of Summer! Enjoy the weather and the outdoors, and when you come back inside - what better time to...
09/18/2021

It's the last weekend of Summer! Enjoy the weather and the outdoors, and when you come back inside - what better time to register for Virtual XLH Day 2021! Click on this link to sign up:
http://ow.ly/sKmn50GcjNs

It's the last weekend of Summer! Enjoy the weather and the outdoors, and when you come back inside - what better time to register for Virtual XLH Day 2021! Click on this link to sign up:
http://ow.ly/sKmn50GcjNs

Board member Elizabeth Olear has been nominated for one of the Global Genes Rare Champion of Hope Awards!!!  It's like...
09/15/2021
2021 RARE Champions of Hope Nominees - Global Genes

Board member Elizabeth Olear has been nominated for one of the Global Genes Rare Champion of Hope Awards!!! It's like being nominated for a Grammy in the rare disease industry! Join us in congratulating Elizabeth! Congatulations!!!

RARE Champion in Advocacy, Foundation 17q12 FoundationThe Chandler ProjectThe Desmoid Tumor Research FoundationCure Rare DiseaseVHL Alliance Emily’s EntourageLife and Family Foundation, VARARE Revolution MagazineIntermountain PKU and Allied Disorders AssciationDDX3XProject 8pSoft Bones, Inc: The U...

Are you an adult with XLH, or a family member of someone with XLH?  Maya Doyle and Miriam DiMaio at Quinnipiac Universit...
09/14/2021

Are you an adult with XLH, or a family member of someone with XLH? Maya Doyle and Miriam DiMaio at Quinnipiac University invite you to complete a survey and/or take part in an interview regarding your experience with XLH and with genetic testing and counseling. Please visit https://xlhnetwork.org/xlh-research-qu-1

Are you an adult with XLH, or a family member of someone with XLH? Maya Doyle and Miriam DiMaio at Quinnipiac University invite you to complete a survey and/or take part in an interview regarding your experience with XLH and with genetic testing and counseling. Please visit https://xlhnetwork.org/xlh-research-qu-1

For today's Thrive Thursday, our thoughts go to all those who are in the process of returning to school:For our children...
09/09/2021

For today's Thrive Thursday, our thoughts go to all those who are in the process of returning to school:

For our children as we send them to school, we hope for a place where Their young minds can learn, play, and develop friendships.

We hope for their teachers to watch over them, guide them, protect them so that they may do the important work they are called to do, even in these uncertain times.

For the support staff, the school nurses, janitors, and administration, we hope for strength and express our gratitude for the work they do, and that they are shielded from adversity and renewed in spirit each day.

We hope that each school community is the best they can be with understanding, patience, respect and kindness - keeping their hearts focused on education and wellbeing of our children
and all those who support them.

We hope this on behalf of parents and families everywhere.

For today's Thrive Thursday, our thoughts go to all those who are in the process of returning to school:

For our children as we send them to school, we hope for a place where Their young minds can learn, play, and develop friendships.

We hope for their teachers to watch over them, guide them, protect them so that they may do the important work they are called to do, even in these uncertain times.

For the support staff, the school nurses, janitors, and administration, we hope for strength and express our gratitude for the work they do, and that they are shielded from adversity and renewed in spirit each day.

We hope that each school community is the best they can be with understanding, patience, respect and kindness - keeping their hearts focused on education and wellbeing of our children
and all those who support them.

We hope this on behalf of parents and families everywhere.

Registration for virtual XLH Day 2021 starts right now! Join us for this free webinar that will include:Keynote Speaker:...
09/08/2021

Registration for virtual XLH Day 2021 starts right now! Join us for this free webinar that will include:

Keynote Speaker: Dr. Emil Kakkis, founder of Ultragenyx

Our beloved Bow-Tie-Brigade: Drs. Thomas Carpenter, Karl Insogna and Erik Imel.

Breakout sessions : (more on this soon)

25th Anniversary SWAG rollout

Register at no cost by clicking here: https://us02web.zoom.us/webinar/register/WN_f1j4Ics5T4-KOw9TcEqY7Q

We can't wait to see YOU!!!
Read less

This Labor Day, thanking the dedicated workers that have carried us through this pandemic is more important than ever. W...
09/06/2021

This Labor Day, thanking the dedicated workers that have carried us through this pandemic is more important than ever. Whether you're a nurse, doctor, first responder, or a caregiver...know that you have our heartfelt gratitude. Happy Labor Day to all!

This Labor Day, thanking the dedicated workers that have carried us through this pandemic is more important than ever. Whether you're a nurse, doctor, first responder, or a caregiver...know that you have our heartfelt gratitude. Happy Labor Day to all!

Friday Funday: I am sure most of us can relate to these on some level. :-) Have a great weekend, everyone!
09/03/2021

Friday Funday: I am sure most of us can relate to these on some level. :-) Have a great weekend, everyone!

From our partners at Yale:
09/02/2021

From our partners at Yale:

From our partners at Yale:

Set your own goal for our 25th anniversary: Reach out to 25 people and share your story and how the Network has been a p...
08/30/2021

Set your own goal for our 25th anniversary: Reach out to 25 people and share your story and how the Network has been a part of your journey. Ask each of them to make a donation so that we can increase the frequency and types of services we offer you. Reach out to us if you would like sample letters, or help with your request.

And share, share, share on your social media pages!

Thank You!

Donation Link: http://ow.ly/2QUc50FRH2q

Set your own goal for our 25th anniversary: Reach out to 25 people and share your story and how the Network has been a part of your journey. Ask each of them to make a donation so that we can increase the frequency and types of services we offer you. Reach out to us if you would like sample letters, or help with your request.

And share, share, share on your social media pages!

Thank You!

Donation Link: http://ow.ly/2QUc50FRH2q

There has been quite a bit of discussion about the Covid vaccines and how they may or may not affect those of us with XL...
08/26/2021

There has been quite a bit of discussion about the Covid vaccines and how they may or may not affect those of us with XLH. While you should always consult with your own medical provider, the recent full FDA approval of the Pfizer vaccine is significant and we would like to make sure our members have as much accurate information as possible.

So, we are bringing back Drs. Thomas Carpenter and Karl Insogna from the Yale Center for XLH next week to do a short video about XLH and the vaccines. Please use this post to tell us what you'd like to know. What questions do you have abut the vaccines? What are some of your concerns? Sound off in the comments below and we will do our best to get those answered next week.

There has been quite a bit of discussion about the Covid vaccines and how they may or may not affect those of us with XLH. While you should always consult with your own medical provider, the recent full FDA approval of the Pfizer vaccine is significant and we would like to make sure our members have as much accurate information as possible.

So, we are bringing back Drs. Thomas Carpenter and Karl Insogna from the Yale Center for XLH next week to do a short video about XLH and the vaccines. Please use this post to tell us what you'd like to know. What questions do you have abut the vaccines? What are some of your concerns? Sound off in the comments below and we will do our best to get those answered next week.

Timeline Photos
08/24/2021

Timeline Photos

Have you made a donation for our 25th anniversary year? Consider raising it by 25%! Or donate in $25 increments. Or dona...
08/23/2021

Have you made a donation for our 25th anniversary year? Consider raising it by 25%! Or donate in $25 increments. Or donate $25, or $250...the possibilities are endless!

Best of all, please think about what the Network has meant to you, and make a donation that represents this, and that is comfortable for you and your family. Every little bit counts. Click here to donate: http://ow.ly/1uGG50FRGDN

Have you made a donation for our 25th anniversary year? Consider raising it by 25%! Or donate in $25 increments. Or donate $25, or $250...the possibilities are endless!

Best of all, please think about what the Network has meant to you, and make a donation that represents this, and that is comfortable for you and your family. Every little bit counts. Click here to donate: http://ow.ly/1uGG50FRGDN

The XLH Network, Inc. Nominating Committee is looking for people with leadership skills, the ability to work as part of ...
08/20/2021

The XLH Network, Inc. Nominating Committee is looking for people with leadership skills, the ability to work as part of a leadership team, and who ask good questions and can follow through on commitments. There are several ways you can volunteer:

1) assist with a short-term project (weeks to months) ex: assist with a regional XLH Day, organize a fundraiser, etc.

2) assist on a committee under the oversight of the committee chair on longer term projects (months to a year)

3) become a board member (3 years)

What to Expect if you are a Volunteer: Volunteers are essential to our organization as we have much work to do. Volunteers can participate in many ways and for varying amounts of time. Volunteers work on projects under the direction of a Board member or Board committee.

What to Expect if You are a Director: We would like to have a diverse Board of Directors in regard to age, gender, geographic location, and background experiences. In particular, we are looking for individuals with skills and experience in the following:

Finances and bookkeeping

Fundraising

Technology/web design

Human resources

Health insurance

Directors are elected to 3 year terms generally (some exceptions) and may serve additional terms. Directors are expected to attend Board meetings 4-6 times per year by teleconference and at least one meeting in person in a location to be decided.

Every Board member is responsible to ensure that the organization fulfills its legal and financial responsibilities and to fulfill the Board's mission.

Board members are also expected to contribute not only their time but also financially each year at an amount that is meaningful to them and to participate in fundraising efforts.

If you are interested in applying to be a volunteer or a Board Member or would like more information, please contact Kathy Buchanan, Nominating Committee Chair at [email protected] no later than August 31.

The XLH Network, Inc. Nominating Committee is looking for people with leadership skills, the ability to work as part of a leadership team, and who ask good questions and can follow through on commitments. There are several ways you can volunteer:

1) assist with a short-term project (weeks to months) ex: assist with a regional XLH Day, organize a fundraiser, etc.

2) assist on a committee under the oversight of the committee chair on longer term projects (months to a year)

3) become a board member (3 years)

What to Expect if you are a Volunteer: Volunteers are essential to our organization as we have much work to do. Volunteers can participate in many ways and for varying amounts of time. Volunteers work on projects under the direction of a Board member or Board committee.

What to Expect if You are a Director: We would like to have a diverse Board of Directors in regard to age, gender, geographic location, and background experiences. In particular, we are looking for individuals with skills and experience in the following:

Finances and bookkeeping

Fundraising

Technology/web design

Human resources

Health insurance

Directors are elected to 3 year terms generally (some exceptions) and may serve additional terms. Directors are expected to attend Board meetings 4-6 times per year by teleconference and at least one meeting in person in a location to be decided.

Every Board member is responsible to ensure that the organization fulfills its legal and financial responsibilities and to fulfill the Board's mission.

Board members are also expected to contribute not only their time but also financially each year at an amount that is meaningful to them and to participate in fundraising efforts.

If you are interested in applying to be a volunteer or a Board Member or would like more information, please contact Kathy Buchanan, Nominating Committee Chair at [email protected] no later than August 31.

Address

911 Central Ave, # 161
Albany, NY
12206

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