Help for hypophosphatasia (HPP) is here.
Soft Bones
Soft Bones provides information to educate, empower, and connect those impacted by HPP.
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The Avalon Foundation
The Avalon Foundation provides emotional and mental support to pediatric patients diagnosed with HPP who are undergoing enzyme replacement therapy.
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Global Genes
Global Genes builds awareness, educates the global community, and provides resources that equip advocates to become activists for their disease.
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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.
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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.
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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.
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HPP Events*
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.
1-844-378-2127
Asterisk denotes Alexion-sponsored program.
The non-Alexion 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.
Join the conversation.
Discover the latest updates and inspiring stories about HPP on our social media pages. Stay informed on the most up-to-date information, real-life stories of hope from individuals living with HPP, and much more.
Visit FACEBOOK Visit INSTAGRAMEducational resources from Alexion
HPP can be a confusing condition to understand, diagnose, and manage. We’ve created resources for you and others interested in learning more about HPP below.
Living with Hypophosphatasia (HPP) Brochure
This brochure contains information about HPP, the role of ALP, and resources available to you. Learn more about searching for an HPP diagnosis, HPP symptoms, genetic factors of HPP, and more.
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Talking About Hypophosphatasia (HPP)
This pamphlet contains information helpful for explaining HPP to others. With a convenient double-sided design, both adults living with HPP or those caring for children living with HPP can learn tools and techniques for explaining HPP to others and navigating various situations.
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Hypophosphatasia (HPP) Journal
A journal created specifically for those impacted by HPP, useful for tracking symptoms, appointments, or reminders.
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It takes a village:
Alexion’s partnerships with advocacy
Alexion is proud to support and partner with various advocacy organizations to support those impacted by HPP. By creating connections and empowering information, Alexion and groups dedicated to HPP endeavor to create hope. One such opportunity connected those living with HPP with an artist who guided them through expressing their feelings about HPP into new vibrant works of art. Take a look below!
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.
Advocating for yourself
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
Advocating for a loved one
Help be their voice.
When a child is living with a rare metabolic disorder such as HPP, their caregiver becomes their first advocate and their example in learning how to advocate for themselves. In time, your child may learn to become their own advocate, but until then, you can be the voice that helps them understand how HPP will impact them and ensure their needs are met at school, in social situations, and even at doctors’ offices.
Make connections.
Any individuals who will be spending time with your child during the day should be aware of their needs. In addition to open and honest conversations about HPP, you may also want to speak with your child’s teachers about whether they should explain HPP to curious classmates—and if so, how.
Come prepared.
People at your child’s school may not know anything about HPP. You can start by providing a written document that outlines your child’s needs. Providing them with written documentation may help them be prepared for any future complications. Consider supplying:
- Possible situations that could arise and how to handle them
- Instructions on whom to contact in case of an HPP-related emergency
- Your pediatrician’s and specialist’s names and numbers
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.
