Soft Bones, The U.S. Hypophosphatasia Foundation, a global patient advocacy organization supporting individuals and families affected by hypophosphatasia (HPP), announced that it has submitted a formal letter on July 27 to the Office of the President of the Republic of Korea and the Speaker of the National Assembly supporting improved treatment access for Korean HPP patients.

In the letter, Soft Bones commended the Korean government’s efforts to improve the diagnosis and treatment of rare diseases, reduce patients’ financial burden, and strengthen access to care. The organization also noted that Korean patients with HPP continue to face relatively limited access to treatment because current reimbursement criteria do not fully reflect the lifelong nature of the disease or variation in clinical manifestations among individual patients.

HPP is a rare inherited metabolic bone disease caused by variants in the ALPL gene. Patients may experience recurrent fractures, chronic bone, muscle, and joint pain, fatigue, reduced stamina, muscle weakness, impaired mobility, dental complications, respiratory problems, and other systemic manifestations.

While HPP was previously classified according to the age of symptom onset, it is now increasingly understood as a lifelong disease in which symptoms and disease burden beginning in childhood may continue into adulthood. Some patients experience fractures, pain, growth problems, or mobility impairment from childhood or adolescence but are not diagnosed until adulthood because of the rarity of the disease and limited awareness.

Under Korea’s current reimbursement criteria, patients must meet biochemical requirements, demonstrate characteristic bone manifestations through radiographic imaging, and begin treatment before the age of 19. As a result, patients diagnosed later in life or without distinct radiographic evidence often face restricted access, even though they experience severe symptoms such as recurrent fractures, persistent bone pain, muscle weakness, or impaired mobility.

Deborah Fowler, Founder and Chairman of the Board of Soft Bones, said, “We are greatly encouraged by the Korean government’s continued efforts to improve the lives of people living with rare diseases and strengthen the treatment environment. We hope this policy commitment will also extend to patients with HPP, who have historically faced challenges in diagnosis and treatment, and that the system will evolve to reflect patients’ actual symptoms and individual treatment needs rather than rigid age criteria.”

Soft Bones noted that treatment-access policies in countries including the United Kingdom, the United States, Japan, and Australia increasingly consider childhood onset, fractures, bone pain, skeletal abnormalities, muscle weakness, mobility impairment, and the patient’s overall clinical condition and treatment needs, rather than excluding patients solely based on their age at treatment initiation.

The Korean Hypophosphatasia Patient Association has also continued to advocate for improvements to the current reimbursement criteria, including:

  • Recognition of a broader range of clinical manifestations beyond radiographic findings;

  • Consideration of genetic testing results together with characteristic clinical symptoms;

  • Revision of the age restriction for patients with confirmed childhood-onset HPP and a current clinical need for treatment; and

  • Measures to prevent significant disparities in treatment access based on the timing of diagnosis or a patient’s current age.

A proposal to expand the current reimbursement criteria was submitted to the relevant Korean authorities in April 2026 and is currently under review. The Korean Hypophosphatasia Patient Association hopes the review results in updated criteria that better reflect HPP’s clinical characteristics and patients’ treatment needs.

Soft Bones also expressed its commitment to continued international solidarity so that Korean HPP patients are not overlooked in policy discussions because of the disease’s rarity and low awareness. The organization stated that it is prepared to provide additional information on patient experiences and to connect Korean policymakers with international clinical experts and members of the global HPP community.

Fowler added, “Korean patients with HPP and their families are not alone. The global HPP community supports their efforts to improve treatment access. We hope patients will be able to receive appropriate treatment at the right time, preserve their function and independence, allowing them to live fuller lives within their families, schools, workplaces, and communities.”

The letter supports the Korean government’s efforts to advance rare disease policy and patient support, while expressing its hope that this commitment will result in meaningful improvements in treatment access for people living with ultra-rare diseases such as HPP, where patient numbers are extremely small, and diagnosis remains challenging.

About Soft Bones

Mission

Our vision at Soft Bones, Inc. is a world free of HPP, made possible through groundbreaking research, innovative treatments, education, awareness, and support for all, ensuring every person affected can look forward to a brighter, healthier tomorrow.

Vision

Driven by patient and caregiver insights, Soft Bones Inc. inspires and galvanizes collective action to foster greater awareness, improve diagnosis, accelerate innovative research and treatments, and ultimately, improve care for those affected by HPP.

Core Values

Because patients can’t wait and we are passionate about making a difference:

  1. We are accountable

  2. We work with rigor

  3. We lead with a servant’s heart

  4. We embrace a can-do spirit

  5. We show grit

  6. We are nimble

 

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