The Alnylam Act® program was created to provide access to genetic testing and counseling to patients with acute hepatic porphyrias as a way to help people make more informed decisions about their health.
– While Alnylam provides financial support for this program, tests and services are performed by independent third parties – Healthcare professionals must confirm that patients meet certain criteria to use the program – Alnylam receives de-identified patient data from this program, but at no time does Alnylam receive patient-identifiable information. Alnylam may use healthcare professional contact information for research purposes – Both genetic testing and genetic counseling are available in the U.S. and Canada – Healthcare professionals or patients who use this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use, or support any Alnylam product – No patients, healthcare professionals, or payers, including government payers, are billed for this program
Kyowa Kirin Inc. and Invitae have partnered to offer sponsored, no-charge genetic testing and counseling to patients being evaluated for a possible diagnosis of X-linked hypophosphatemia (XLH) or tumor-induced osteomalacia (TIO), are aged 6 months or older (for XLH) and 2 years or older (for TIO), reside in the United States or Canada, and meet certain other eligibility criteria.
An accurate diagnosis may impact the clinical management of the condition, including customizing care to a patient’s specific needs. The Kyowa Kirin Sponsored Hypophosphatemia Panel (13 genes) is designed to provide optimal diagnostic yield for patients with genetic forms of hypophosphatemia, based on the current scientific understanding. This panel also provides reasonable exclusionary yield for patients who are suspected of having TIO, in whom we would expect normal genetic test results.
The Kyowa Kirin Sponsored Hypophosphatemia Program is intended to improve patient safety and quality of care by shortening the time to an accurate diagnosis, facilitate prompt confirmatory testing, and help patients with XLH or TIO meet payor coverage requirements. Use of or participation in the Kyowa Kirin Sponsored Hypophosphatemia Program does not create any obligation to use, prescribe, or recommend any Kyowa Kirin products or services. No patient or health care provider may seek reimbursement for testing or counseling services provided under the Kyowa Kirin Sponsored Hypophosphatemia Program from any third party, including but not limited to, any government health care programs.
To provide patients with genetic information that can help establish a diagnosis for XLH or TIO, the program guidelines are as follows:
– While Kyowa Kirin provides financial support for this program, tests and services are performed by independent third parties. – Healthcare professionals must confirm that patients meet certain criteria to use the program. – Healthcare professionals or patients using this program are not obligated to recommend, purchase, order, prescribe, promote, administer, use, or support any Kyowa Kirin product. – No patients, healthcare professionals, or payers, including government payers, are billed for this program. – Kyowa Kirin will not receive any individual test result data, personally identifiable information, or physician ordering information. Any data that may be transmitted will be de-identified and aggregated.
This program provides sponsored, no-charge genetic testing for individuals suspected of having long-chain fatty acid oxidation disorders (LC-FAOD).
Long-chain fatty acid oxidation disorders are a group of six rare autosomal recessive disorders that are caused by defects in the mitochondrial carnitine shuttle or β-oxidation enzymes.
Ultragenyx receives de-identified patient data from this program, but at no time does Ultragenyx receive patient-identifiable information. Ultragenyx uses healthcare professional contact information for research and commercial purposes.
The Detect Lysosomal Storage Diseases Program offered by Invitae is designed to facilitate the diagnosis of lysosomal storage disorders (LSDs) by providing no-cost genetic testing to individuals who exhibit symptoms suggestive of LSDs. This program aims to identify the specific genetic mutations responsible for these conditions, enhancing the accuracy of diagnoses and enabling more targeted treatment approaches. By offering comprehensive genetic testing and counseling at no charge, Invitae supports healthcare providers in confirming suspected cases of LSDs, which can be crucial for early intervention and optimal disease management. This initiative not only assists in individual patient care but also contributes to broader efforts to understand the prevalence and genetic diversity of LSDs.
