XLH Resources

Here are some downloadable resources and online resources that can equip you with more information about XLH for you and your family members to support you in managing your disease.
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Wherever you are in the world there are organisations out there to support you.

XLH patient organisations – supporting those affected by XLH

1. XLH Alliance
Founded in 2018, the XLH Alliance is an alliance of patient groups for individuals affected by X-linked hypophosphatemia and related disorders. The XLH Alliance will direct you to organisations in your country that can provide information, education and a community to join that could provide support to you and your family.
www.xlhalliance.org/
 
2. Malaysian Rare Disorders Society (MRDS)
Formed in 2004, MRDS is a member of RDI and aims to increase awareness of rare disorders through providing information and education.
http://www.mrds.org.my/
 
3. Rare Diseases Hong Kong
A member of RDI, Rare Diseases Hong Kong was established in 2014. The first council members are majority patients while the scientific and medical advisory committee (SMAC) are made up of doctors and professors.
https://rdhk.org/
 
4. Rare Diseases Society Singapore (RDSS)
RDSS was established in 2011 and aims to engage individuals and organizations, both private and public, to raise awareness on rare disorders and how we can all do a part to help patients living with rare disorders. The RDSS leadership team consists of members of the public with medical doctors acting as medical advisors.
http://www.rdss.org.sg/
 
5. Illness Challange Foundation (ICF)
Established in 2016, the illness challenge foundation (ICF; also known as the Beijing Pain Challenge Charity Foundation) aims to support patient organizations and promoting policy and rights advocacy activities for rare diseases.
http://www.chinaicf.org/
 
6. Taiwan Foundation for Rare Diseases (TFRD)
TFRD, established in 1999, has been an active force in advocating for rare disease patients in respect of medication, education, and employment, and will continue to give its best effort to light up the lives of many rare disease patients.
http://www.tfrd.org.tw/eng/home
 
7. XLH Australia
Established in 2018, XLH Australia is a patient support and advocacy group for people living with XLH. With a focus on promoting community awareness of XLH, providing support, education and information for affected families and HCPs.
https://xlhaustralia.com/
 
8. Korean Organization for Rare Diseases (KORD)
KORD’s goal is to stay together until the end, even if it’s only one disease. We are making various efforts not only to provide direct help to patients and their families in resolving various difficulties, such as the environment and problem situations, but also strive to lead a life as a respected member of society.
https://www.kord.or.kr
 
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AP-NP-22-00004 OCT2022