Support for HPP
Discover resources and organizations that can offer support
It may feel like you’re all alone on this journey with hypophosphatasia, but you’re not! There are many organizations that are ready and willing to lend a helping hand.
All patient images and quotes are hypothetical
All patient images and quotes are hypothetical
Help for hypophosphatasia
(HPP) is here.
(HPP) is here.
Soft Bones
Soft Bones provides information to educate, empower, and connect those impacted by HPP.
Avalon Foundation
The Avalon Foundation is committed to youth centered leadership development through service to families affected by rare diseases.
Global Genes
Global Genes builds awareness, educates the global community, and provides resources that equip advocates to become activists for their disease.
National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) offers education, advocacy, research, and patient services for people living with rare diseases and other organizations that serve them.
Osteogenesis Imperfecta (OI) Foundation
The Osteogenesis Imperfecta (OI) Foundation aims to improve the quality of life for those living with OI through research, education, awareness, and mutual support.
Alexion OneSource™
OneSource™ is a complimentary, personalized patient support program offered by Alexion. OneSource™ is made up of dedicated Case Managers with expertise in HPP, including information on a possible treatment option, and health insurance who are ready to help.
Unmask HPP Events
Unmask HPP events are no-cost, educational programs offered by Alexion that connect patients and caregivers within the HPP community. During each event, you’ll hear from someone who lives with or cares for someone with HPP, as well as an HPP healthcare professional. You’ll also receive information about a possible treatment option.
Peer Connects Program
Peer Connects is a phone-based program offered by Alexion that matches you with an HPP STAR who will share their story and listen to yours. It’s an opportunity to ask questions and connect with someone who understands HPP firsthand.
HPP STAR Ambassador Program
The HPP STAR Ambassador Program offered by Alexion encourages those impacted by HPP to share their story to educate, inspire, and support others in the HPP community.
The non-Alexion related HPP advocacy and support resources listed above are independent, nonprofit patient service organizations. Their listing on this website does not imply endorsement. All logos and trademarks are the property of their respective owners.
Advocating for yourself (and others) with HPP.
Getting started can feel overwhelming—but it doesn’t have to be. Self-advocacy, or advocacy for a child in your care, starts right here.
Talk to a doctor.
By speaking with a trained doctor, you may get the validation you deserve:
- Bring a list of questions to each visit.
- Get information on management options.
- Bring a loved one or friend for support.
Share the impact of your symptoms.
Have honest conversations with your loved ones about HPP. Help the people you love understand what it means for you, how it may be limiting, and what you need from them as support.
Plan for HPP.
When it comes to managing your pain at work, or helping your child fight fatigue at school, making a health plan is key. A health plan should include:
- Safe activities for you or your child to participate in
- Medicines or procedures required at work or at school
- Possible problems that could arise and how to handle them
- Emergency and doctor contact information
By sharing your experience, you may help others understand what you’re going through and share information about this condition, which is so often misunderstood. From expert medical care, to HPP forums and groups, patient support and community are available.
We’re here to help.
Join a personalized patient support program to learn more about disease information, connect with other patients, and more.
