Patient Support
Soft Bones is proud of it’s support services to patients. We provide a Physician Support Service, Personalized Access Support, HPP Partner and Learn Program amongst many other programs of education and support.
Contact maryelizabeth@softbones.org
Physician Referral Network
Soft Bones provides screened referrals for a wide array of specialists who are needed to treat those with HPP using a multi-disciplinary approach. Over time, our organization has developed a list of trusted pediatric and adult general practice physicians and specialists with experience treating HPP patients. Anyone looking for assistance finding a medical provider with HPP experience can directly contact Soft Bones at info@softbones.org
Personalized Access Support
Awaiting a diagnosis and need an advocate? Newly diagnosed and not sure where to begin? Looking for assistance with medical insurance premiums or access to care? Need a doctor or specialist? Looking for financial assistance? Our staff are considered the “go-to” experts with in-depth knowledge of systems of care in many specialized areas. Please contact us– we are well-versed and well-connected. We can help!
HPP P.A.L. (Partner and Learn) Program
Be matched with a fellow patient, caregiver, or parent who can provide peer support, encouragement and education as you navigate a new diagnosis or serve as an experienced community member. Contact info@softbones.org for more information.
Region Program (US only)
Soft Bones has created Regions across the US to provide localized support to a growing and geographically dispersed community. The Region Leads are attentive to patient needs and act as ears to the ground, in their respective areas, sending information and insights back up to the national organization to help identify programs and materials needed by the HPP community. Region Leads also spearhead grassroots awareness, fundraising and policy efforts at the local level. Visit the Region/Region Lead page to find your region and connect with your local region lead.
HPP AND ME Online Community
Soft Bones has been proud to share the stories of so many HPP patients, and offers our own moderated platform for people to connect. Through the online discussion boards, patients, caregivers, family members and healthcare professionals can learn from others and find support. Because it’s so rare, it is hard to find people to identify with locally, and HPP AND ME offers this through a virtual connection, which is extremely important.Our boards make it easy to chat with others, search for answers to specific questions, or browse information by topic to learn more about HPP. Start the conversation today!
Travel Grant Program
Soft Bones can assist HPP patients and their families that face obstacles specifically when traveling to Regional and National Patient Meetings. Contact info@softbones.org for more information.
“Bare Bones” – Soft Bones Newsletter
Soft Bones is proud to offer an HPP newsletter to all members, as well as the general public. Every edition provides valuable information for patients and families related to medical advancements, accomplishments of Soft Bones in the rare disease community, opportunities to raise funds, and much more. Read our newsletters here.
