Have a Patient?
Being diagnosed with a chronic disease can be devastating for patients and their families. Soft Bones was founded by patients to support others diagnosed with this rare, metabolic disease.
If you are a physician who is currently treating or is interested in treating patients with HPP, please reach out to us at firstname.lastname@example.org to be added to our Physician Referral List. We also send new patients a Soft Bones Information Packet with general information and resources.
Programs for HPP Clinicians:
- Soft Bones TeleECHO
This series, provided monthly at no cost for physicians and researchers, is designed to improve patient care through “telementoring” presentations and discussions on different HPP-related topics. Physicians can receive continuing medical education (CME) credit for participating in the TeleECHO sessions. They are designed based on a knowledge-sharing model, where experts lead virtual clinics and amplify the knowledge for providers to deliver best-in-class care in their own communities. Brief case presentations can be submitted for discussion post-lecture. Along with Soft Bones staff, a carefully selected faculty of experts plan and oversee the program and curriculum. Faculty members are Dr. Michael Whyte, Shriners Hospitals for Children, St. Louis, MO; Dr. Matthew Drake, Mayo Clinic, Rochester, MN; and Dr. Kathryn Dahir, Vanderbilt University Medical Center, Nashville, TN, who each bring a unique specialty to the program. Sessions are held the second Friday of each month. Medical professionals participate via Zoom. For physicians and researchers who would like to register, email us at Echo@softbones.org.
- Rare Bone TeleECHO
Presented monthly, faculty members or guest speakers engage in a brief didactic presentation, followed by participant-led case presentations and group discussion of the featured disease, including HPP. The faculty encourages participants to present case studies related to rare bone diseases at each session. Participants are eligible to earn CME credit for attending these ECHO sessions. Email Echo@softbones.org for information
- HPP Connect
HPP Connect is an online collaborative community for ongoing, multi-specialty, peer-to-peer exchange, dialogue and education focused on hypophosphatasia (HPP). It connects clinicians with experience evaluating and treating HPP to one another to foster knowledge-sharing and collaboration. Because HPP is a rare disease that is heterogeneous in its clinical presentation, some clinicians may have had exposure or treated only a handful of patients. HPP Connect enables access to world-leading experts in HPP, so the medical community can exchange information and learn from one another. The platform allows physicians to engage in collaboration and scientific exchange that aims to speed up identification and appropriate treatment of patients who have HPP. It allows for two-way engagement, input and analysis using discussion and polling features. Physicians can efficiently connect, collaborate and share information when convenient in a secure, private, compliant online location. Through sustained dialogue and insight sharing, HPP clinicians can elicit feedback and engage with one another as well as other stakeholders, such as clinical trial teams, steering committees, and advocacy boards. Ultimately this will benefit patient care by improving the overall patient experience and confidence in the care team, as well as increase the number of doctors who are knowledgeable about HPP. The platform also offers on-demand access to previously recorded TeleECHO sessions.For more information or to register, email HPPConnect@softbones.org.
- We encourage patients to join the Global HPP Patient Registry. Soft Bones has partnered with Coordination of Rare Diseases at Sanford (CoRDS) to create an International HPP Contact Registry. The registry provides patients and caregivers with a secure means of making their basic disease information available to researchers without sacrificing privacy. By joining the registry, patients can help researchers see the whole picture and gain valuable information for a disease that they know too little about. Information learned through the registry plays a vital role in improving treatments and finding a potential cure. For more information visit CoRDS Global HPP Patient Registry.
We are happy to provide you with copies of our HPP resources. If you are interested in ordering some of our brochures, please email us for order form of our available resources.
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