Soft Bones Canada

What Soft Bones Canada does

Soft Bones Canada is a Canadian non-profit patient advocacy organization dedicated exclusively to Hypophosphatasia (HPP), a rare metabolic bone disorder with an estimated incidence below 1:100,000. Founded in 2013 (with roots tracing to a 1999 organization called 'Canadian Hypophosphatasia Contact') and incorporated as a registered Canadian charity in Alberta (Business Number 809947765RR0001), the organization provides patient education, empowerment, and community connection services to HPP patients, caregivers, and healthcare professionals across Canada. Its core offering is a website platform (softbonescanada.ca) that aggregates educational content, expert Q&A ('Ask The Experts'), disease information across all HPP forms (perinatal through adult), treatment resources (including asfotase alfa / Strensiq and investigational therapies), newsletters, webinars with Canadian HPP specialists, and access to provincial connection groups in Ontario, Alberta, and Manitoba. The organization also publishes brochures, ICE wallet cards, and a video gallery, and operates an active social media presence on Facebook, Twitter, and Instagram, plus Low German radio outreach (Die Brigj 105.9 FM) targeting specific Canadian demographics.

The organization is governed by a small Board of Directors (Jennifer Paulson-Brand as President, Linda Toews and Jeremy Harany as Directors) with a Scientific Advisory Board chaired by Dr. Cheryl Rockman-Greenberg, whose members include Dr. Philippe Crine (co-inventor of asfotase alfa), Dr. Leanne Ward, Dr. Frank Rauch, and Dr. Marc D. McKee. There is no proprietary technology — the platform is a content-driven website built on standard web infrastructure. The business model is donation-funded: Soft Bones Canada accepts contributions via the CanadaHelps platform and is supplemented by minor program sponsorships (Vitaflo, SSIEM, St. Joseph's Catholic High School). Membership and participation in all programs are free. The organization operates under the 'Soft Bones family' umbrella alongside Soft Bones USA, UK, Australia/New Zealand, and partners in Germany, Europe, and Japan, but is independently governed and domiciled in Canada.

Name

Soft Bones Canada

Legal name

Soft Bones Canada™

Website

https://softbonescanada.ca

Company type

Private

Founded year

2013

Operating status

Operating

Short description

Soft Bones Canada is a Canadian non-profit patient advocacy organization (founded 2013, registered charity) that educates, empowers, and connects patients, caregivers, and clinicians living with the rare metabolic bone disorder Hypophosphatasia (HPP) through a website platform, publications, expert webinars, and provincial community groups in Ontario, Alberta, and Manitoba.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Individual and Family Services (6241), Social Assistance (624)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090), Services-Membership Organizations (8600)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disability Services & Assistive Solutions (Accessibility, Assistive Tech) (BPAGALAM), Private Foundations (BPAGAKAA)

Keywords

• Rare disease advocacy
• Patient support services
• Hypophosphatasia education
• Rare bone disorder
• Patient community building

Headquarters

HQ city

Lethbridge

HQ country

Canada

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others, Technology or R&D

Revenue model

1. Donations and Fundraising: Soft Bones Canada relies on donations from the public to fund its operations. Donations support the organization's ability to educate, empower, and connect HPP patients through its website, publications, webinars, and patient meetings.

Go-to-market motion1 record

Distribution channels2 records

Marketing channels7 records

Core offering

Soft Bones Canada educates, empowers, and connects patients and families affected by Hypophosphatasia (HPP), a rare metabolic bone and tooth disorder, through a comprehensive website hub, expert Q&A resources, publications and newsletters, webinars, and peer support networks. The organization is a registered Canadian charity that delivers all programs free of charge and is funded primarily through public donations.

Product overview

Soft Bones Canada operates primarily as a patient support organization and informational resource platform rather than a technology product company. The core offering is a comprehensive website that aggregates educational content about Hypophosphatasia (HPP), including publications, expert Q&A resources, treatment information, and community connection tools. Key products include the main website platform, Ask The Experts consultation resource, Publications (brochures and newsletters), Signs & Symptoms documentation, Treatments information, Community Registration with welcome packages, Provincial Connection Groups, Video Gallery, and practical Resources including ICE cards. The organization is a registered Canadian non-profit (Business Number: 809947765RR0001) focused on educating, empowering, and connecting HPP patients and families rather than developing or selling commercial products.

Differentiator

Problem solved

Functional benefit

Products and services

• Soft Bones Canada Website Platform A patient-focused informational website that serves as the primary hub for educating, empowering, and connecting HPP patients, families, and caregivers in Canada. Aggregates resources, publications, expert Q&A content, and community connection tools.
• Ask The Experts A Q&A and expert consultation resource covering diagnostics, primary care, and therapeutics for HPP, including sub-sections on biomarkers, clinical trials, diagnosis, genetics, research, signs and symptoms, and treatment approaches.
• Signs & Symptoms Resource Comprehensive resource documenting the signs, symptoms, and clinical manifestations of Hypophosphatasia across all age groups (perinatal, infantile, childhood, juvenile, adult, and odontohypophosphatasia forms).
• Treatments Information Educational resource covering approved enzyme replacement therapies (Asfotase Alfa/Strensiq) and investigational treatments including recAP (AM-Pharma), teriparatide, anti-sclerostin antibody, and bone marrow transplantation.
• Publications (Brochures & Newsletters) Educational brochures and newsletters including 'Hypophosphatasia: A Dental Disease', 'SBC Trifold', 'Overview of Hypophosphatasia', and monthly/quarterly newsletters dating back to the inaugural issue.
• Video Gallery Educational video collection covering topics including 'What is HPP', 'Diagnosing HPP', 'Pathophysiology of HPP', 'The Genetics of HPP', and 'Multidisciplinary approach to managing HPP', along with Low German audio radio interviews.
• Community Registration and Welcome Package Membership program offering registration, welcome packages with valuable resources, annual e-zine subscriptions, access to provincial connection community groups, and emailed updates on HPP research and effects.
• Provincial Connection Groups Regional support group networks including Ontario Connection, Alberta Connection, and Manitoba Connection, providing peer support and community building for HPP patients and caregivers across Canada.
• Resources and ICE Cards Practical resources including downloadable ICE (In Case of Emergency) wallet cards, plus links to disability benefits, healthcare programs, dental assistance, and travel accommodations through Air Canada and WestJet.

Quantifiable outcome

• 295 registered members on Yahoo mailing list by October 2013
• +2 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Nine partnerships are on record, tiered minor and core.

• VitaflominorOthers · 2 June 2019Vitaflo (a nutrition company) sponsored the 14th annual low protein cooking demonstration at the Metabolic Family Workshop on June 2, 2019, as part of Soft Bones Canada's educational and lifestyle support programs.
• Soft Bones USAcoreStrategic or Co-development PartnerSoft Bones Canada operates under the 'Soft Bones family' umbrella alongside Soft Bones USA. In 2013, founder Debbie Taillefer was invited by Deb Sittig (Soft Bones USA) to join under the umbrella brand. This partnership provides international reach and resource sharing between the two organizations.
• Hypophosphatasie Deutschland E.V.minorGTM or Marketing PartnerGerman HPP patient organization listed as an international partner, enabling cross-border patient connections and information sharing.
• Hypophosphatasie EuropeminorGTM or Marketing PartnerEuropean HPP patient organization listed as an international partner, enabling cross-border patient connections and information sharing.
• Hypophosphatasia JapanminorGTM or Marketing PartnerJapanese HPP patient organization listed as an international partner for cross-referral and community support.
• Soft Bones UKminorGTM or Marketing PartnerUK HPP patient organization under the Soft Bones family brand, listed as an international partner for community connections.
• Soft Bones Australia and New ZealandminorGTM or Marketing PartnerAustralia and New Zealand HPP patient organization, listed as an international partner for community connections and shared resources.
• Rare ConnectminorGTM or Marketing PartnerInternational rare disease online community platform enabling patient connections across disease groups, including HPP.
• Alexion PharmaceuticalsminorOthersAlexion developed asfotase alfa (Strensiq) and operates the Metabolic Assistance Program (MAP) for eligible Canadian patients. Soft Bones Canada provides information about these programs and facilitates patient access to therapy.

Scale indicators5 records

Recent moves9 records

Expansion highlights5 records

Direct peers

• Soft Bones USA: US-based HPP patient advocacy organization under the same Soft Bones family umbrella, founded by Deb Sittig, which directly invited Soft Bones Canada to join the brand in 2013. Operates a near-identical mission of HPP patient education, support, and research advocacy.

Broad incumbents

• Canadian Organization for Rare Disorders (CORD): Canada's national umbrella for rare disease patient organizations, providing policy advocacy, resources, and member services across many conditions including HPP. Comparable as a Canadian non-profit serving rare-disease patient communities with advocacy and education.
• Osteogenesis Imperfecta Foundation of Canada (OIF): Canadian non-profit supporting patients with another rare bone disorder (OI). Comparable as a Canadian patient advocacy organization for a rare genetic bone disease, with similar education, community, and research-fundraising activities.

Regional players

• Hypophosphatasie Deutschland E.V. German HPP patient organization and listed international partner of Soft Bones Canada. Directly comparable as a country-specific HPP patient advocacy group, but serving Germany rather than Canada.
• Soft Bones UK: UK-based HPP patient organization under the Soft Bones family umbrella and listed international partner. Comparable as an HPP-specific patient advocacy group, but operating in the UK rather than Canada.
• Soft Bones Australia and New Zealand: Australian/NZ HPP patient organization under the Soft Bones family umbrella and listed international partner. Comparable as an HPP-specific patient advocacy group serving a different geography.

Emerging players

• Magic Foundation (Major Aspects of Growth In Children): US-based non-profit supporting children with growth-related disorders, including rare metabolic bone conditions overlapping with HPP. Comparable as a patient advocacy organization focused on rare pediatric metabolic and bone disorders, though broader than HPP alone.

Others

• Alexion Pharmaceuticals / AstraZeneca Rare Disease: Developer of asfotase alfa (Strensiq), the principal therapy around which Soft Bones Canada organizes treatment education and patient access support. Comparable as an ecosystem participant rather than a peer organization, with a partnership rather than competitive relationship.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/softbonescanada
• Facebookfacebook.com/SoftBonesCanada
• Instagraminstagram.com/softbonescanada

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Soft Bones Canada