International Niemann-Pick Disease Alliance (INPDA)

What International Niemann-Pick Disease Alliance (INPDA) does

The International Niemann-Pick Disease Alliance (INPDA) is a non-profit organization founded in 2009 and headquartered in Washington, Tyne & Wear, United Kingdom. As its name implies, it operates internationally as an umbrella body coordinating advocacy, support, and awareness efforts for Niemann-Pick disease — a group of rare, fatal lysosomal storage disorders. The organization serves the global Niemann-Pick patient, caregiver, and clinician community, with the "international" framing suggesting it links national patient associations across multiple countries and acts as a collective voice in research, policy, and pharmaceutical engagement.

The organization is small, with a headcount of approximately 6 employees, consistent with a lean non-profit secretariat model rather than a clinical or research operation. No products, services, technology platforms, partnerships, management team, or revenue figures were extractable from the available data; the INPDA website returned a CAPTCHA/verification page during extraction, and third-party sources provided no supplementary detail. There is no disclosed pricing, revenue model, or customer segmentation — reflecting the standard non-profit grant/donation funding pattern typical of rare-disease alliances, though specific figures are unconfirmed.

No funding rounds, acquisitions, leadership changes, geographic expansions, or strategic initiatives are documented in the input. The organization is assumed to be operational based on its public-facing website existence, but this is not directly confirmed. The investment-relevant picture is therefore limited: INPDA is a small, long-established, internationally scoped rare-disease advocacy non-profit with very low public financial transparency, and no commercial or technology differentiators are evident from the data available.

Name

International Niemann-Pick Disease Alliance (INPDA)

Legal name

International Niemann-Pick Disease Alliance

Website

https://inpda.org

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

International Niemann-Pick Disease Alliance (INPDA) is a UK-based non-profit umbrella organization, founded in 2009, that coordinates global advocacy and awareness for the rare Niemann-Pick disease community of patients, families, and clinicians.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Public Health Governance, Interagency Coordination & Partnerships (HLAJAMAD)

Keywords

• Rare disease advocacy
• Patient support services
• Disease awareness
• Genetic disorder alliance
• Patient association coordination

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Core offering

The International Niemann-Pick Disease Alliance (INPDA) is a non-profit umbrella organization that connects national Niemann-Pick disease patient associations worldwide. It represents the global Niemann-Pick disease community by raising awareness, supporting patients and families, advocating for research, and facilitating collaboration among member organizations, clinicians, and researchers.

Differentiator

Problem solved

Functional benefit

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Recent moves1 record

Others

• Orphanet: International reference portal for rare diseases and orphan drugs. Comparable as enabling infrastructure for the rare-disease ecosystem in which INPDA operates, though not a peer advocacy group itself.

Emerging players

• Global Genes: US-based rare-disease advocacy and patient-support alliance with strong digital and educational programs. Comparable as a rare-disease convening and awareness organization, though broader in scope than INPDA.
• Genetic Alliance: US-anchored alliance of disease-specific advocacy organizations, including those focused on genetic conditions. Comparable to INPDA as a network of patient/disease groups, with broader genomic-disease remit.

Broad incumbents

• National Organization for Rare Disorders (NORD): US-based umbrella for rare-disease patient groups with policy, research, and member-service programs. Comparable as a high-profile rare-disease alliance, but US-focused and disease-agnostic versus INPDA's international, disease-specific remit.

Direct peers

• EURORDIS – Rare Diseases Europe: European umbrella alliance for rare-disease patient organizations. Directly comparable to INPDA as a multi-country convening and advocacy body, but operating at a broader (all-rare-disease) scope rather than Niemann-Pick specific.
• Rare Diseases International: Global alliance of rare-disease patient organizations. Highly comparable to INPDA in international convening role, but again covers all rare diseases globally rather than a single disease.
• Niemann-Pick UK: UK-based national Niemann-Pick disease patient organization. Directly comparable as a disease-specific advocacy and support group, and a likely member/affiliate within the INPDA network.
• National Niemann-Pick Disease Foundation (US): US national Niemann-Pick disease patient organization focused on support, research funding, and advocacy. Directly comparable to INPDA at the national level, with similar disease-specific mission.

Regional players

• Canadian Niemann-Pick Disease Foundation: Canadian national Niemann-Pick patient organization offering family support and research advocacy. Comparable in disease-specific mandate and likely a member organization within the INPDA alliance.
• Niemann-Pick Foundation Australia: Australian national Niemann-Pick disease advocacy and support organization. Directly comparable in mission; geographically distinct from INPDA's UK base but a natural affiliate in its member network.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat2 records

Key risks4 records

Key highlights4 records

Customer concentration

• LinkedInlinkedin.com/company/international-niemann-pick-disease-alliance-inpda

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about International Niemann-Pick Disease Alliance (INPDA)