Skip links

Choosing a Specialty Pharmacy to Support Patients with X-linked hypophosphatemia

X-linked hypophosphatemia (XLH) is an inherited rare disorder that affects 1 in 20,000 individuals and is characterized by low levels of phosphate in the blood.1 Phosphate levels are low because phosphate is abnormally processed in the kidneys, which causes a loss of phosphate in the urine (phosphate wasting) and leads to soft, weak bones (rickets).2

The goals of treatment for children with XLH are1:

  • To address growth issues
  • To correct existing rickets and improve the mineralization of bones and teeth
  • To correct leg abnormalities, often through surgeries
  • To improve physical function through physical therapy

The goals of treatment for adults with XLH are1:

  • To reduce the pain, fatigue, and stiffness of the bones, muscles, and joints through physical therapy and pain management
  • To correct leg abnormalities and fractures through surgery
  • To improve bone and dental health

A confirmed diagnosis of XLH can be a scary feeling for your patients. That is why finding the right healthcare team that you can be comfortable with is important. When choosing a specialty pharmacy to support patients with X-linked hypophosphatemia, it’s essential to consider a team experienced in rare diseases, ready to listen, provide counseling on treatment, help with side-effect management, and assist with sourcing third-party financial assistance.

As part of your X-linked hypophosphatemia patient’s treatment, Orsini Specialty Pharmacy provides the following:

Access to X-linked hypophosphatemia MedicationsChoose a specialty pharmacy with access to X-linked hypophosphatemia medications. Orsini Specialty Pharmacy has access to Crysvita® (burosumab-twza) injection, for subcutaneous use.

X-linked hypophosphatemia Care Team: Patients need an experienced care team who can provide information and support throughout their journey. The X-linked hypophosphatemia care team includes a single point of contact, clinical education, side-effect management, scheduled refill calls, and a direct phone, fax, and email address.

Shipping & Coordination of Care: Patients receive free priority overnight delivery of medications and necessary medical supplies. Orsini manages care coordination between prescribers, care sites, and patients.

Financial Assistance: Medications can be costly, and many patients cannot afford the co-pays associated with their health insurance. Orsini helps identify and assist in enrolling patients into manufacturer co-pay and foundation support programs.

24/7/365 Access to a Pharmacist: Choose a specialty pharmacy that can provide access to a pharmacist 24/7/365 to ensure patients always receive care when they need it.

If you are a prescriber or physician’s office representative, click here to access the X-linked hypophosphatemia enrollment form. In addition, you can always connect with an Orsini representative to schedule a call and answer any questions. If you are a prospective patient, click here to start your patient enrollment form.