Rare Disease Hong Kong (RDHK)

What Rare Disease Hong Kong (RDHK) does

Rare Disease Hong Kong (RDHK), legally Rare Disease Hong Kong Limited (香港罕見疾病聯盟有限公司), is a Hong Kong-incorporated non-profit company limited by guarantee under the Companies Ordinance (Chapter 622). Founded in 2014 (originally as Hong Kong Alliance for Rare Diseases / HKARD, rebranded circa 2024), RDHK operates as the primary umbrella patient-advocacy organization for rare disease patients and families in Hong Kong, headquartered in Kowloon. As of May 28, 2026, it represented 1,056 members (916 full members — 907 individuals plus 9 organizational members — and 140 ordinary supporters) across 276 distinct rare disease types.

RDHK's service portfolio centers on five product pillars. First, knowledge and reference assets: the patient registry (病人名冊), the Hong Kong Rare Disease Drug Reference List (v202505), the Hong Kong Rare Cancer Drug Reference List, the Rare Disease Wiki (罕病小百科), and the Bookshelf (罕病小書架). Second, financial assistance: disease-specific subsidy schemes for Fabry disease cardiac ultrasound and cardiac MRI, plus the broader Healthcare Supplies and Services Subsidy Pilot Scheme. Third, publications and content: the RareCare annual magazine (罕情) and the 10th Anniversary Commemorative Issue. Fourth, education and outreach: the Human Library School Sharing Program (罕故事學校分享計劃) and ad-hoc medical workshops (e.g., Huntington's disease, Fabry disease, medication management). Fifth, convening: the annual World Rare Disease Day Seminar, with the 2026 edition held at the Hong Kong Sheraton Hotel.

Revenue is generated through three streams: (1) membership fees split between full members (patients, families, patient organizations) and ordinary members (supporters) per the Articles of Association; (2) one-time and recurring monthly donations; and (3) administration of patient subsidy schemes. The organization is governed by a 5-13 member Council elected at annual general meetings, supported by an advisory board drawn from HKU, CUHK, and former Hospital Authority executives. No commercial products are sold, and no equity funding is in place; the organization is independent and member-based.

Name

Rare Disease Hong Kong (RDHK)

Legal name

Rare Disease Hong Kong Limited 香港罕見疾病聯盟有限公司

Website

https://rdhk.org

Company type

Private

Founded year

2014

Operating status

Operating

Headcount range

1–10 employees

Short description

Rare Disease Hong Kong (RDHK) is a Hong Kong non-profit patient advocacy organization founded in 2014, serving as the umbrella body for 1,056 members across 276 rare disease types through a patient registry, drug reference lists, financial subsidy schemes, educational programs, and an annual World Rare Disease Day seminar.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190)

SIC

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

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Disease Registries (Cancer, Immunization, Rare Disease, etc.) (HLAJAJAE)

Keywords

• Patient advocacy services
• Rare disease support
• Patient registry platform
• Healthcare subsidy programs
• Community education outreach

Headquarters

HQ city

Kowloon

HQ country

Hong Kong SAR China

HQ region

Asia

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Membership fees: Members pay membership fees to join the organization. Full members (patients, family members, and patient organizations) and ordinary members (supporters) pay different fee structures as defined in the Articles of Association.
2. Donations and contributions: The organization accepts donations from individuals and organizations to support its mission of helping rare disease patients in Hong Kong. Donations can be one-time or monthly recurring contributions.
3. Subsidy schemes: The organization administers various subsidy schemes for rare disease patients including cardiac ultrasound and MRI diagnostic services, and other healthcare needs support programs.

Distribution channels1 record

Marketing channels5 records

Core offering

Rare Disease Hong Kong (RDHK) is a patient advocacy non-profit organization that operates a membership-based support platform for rare disease patients in Hong Kong. Its core offerings include a patient registry, published rare disease and rare cancer drug reference lists, subsidy schemes for diagnostic services and healthcare needs, educational publications (RareCare, Wiki, Bookshelf), and community programs such as the Human Library School Sharing initiative and the annual World Rare Disease Day Seminar.

Product overview

Rare Disease Hong Kong (RDHK) is a patient advocacy non-profit organization (擔保有限公司) that serves as an alliance for rare disease patients in Hong Kong. Rather than a technology product company, RDHK provides a portfolio of patient support services including a patient registry system, drug reference lists (Hong Kong Rare Disease Drug Reference List and Rare Cancer Drug Reference List), various subsidy schemes for cardiac imaging and healthcare needs, educational resources (RareCare publication, Rare Disease Wiki, Bookshelf), community programs (Human Library School Sharing Program), and organizes annual events such as the World Rare Disease Day Seminar. These services are connected through their membership platform that supports 1,056 members across 276 rare disease types.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Registry (病人名冊) A registry system for rare disease patients in Hong Kong that allows patients and families to register, supporting disease tracking and research.
• Hong Kong Rare Disease Drug Reference List (香港罕見疾病藥物參考清單) A reference list of approved rare disease drugs in Hong Kong (v202505) to help patients access medication information.
• Hong Kong Rare Cancer Drug Reference List (香港罕見癌症藥物參考清單) A reference list of drugs for rare cancers in Hong Kong to support patient access to treatment information.
• Subsidy Schemes (資助計劃) Various financial assistance programs including cardiac ultrasound and MRI subsidies for Fabry disease patients, and healthcare needs subsidy pilot schemes.
• RareCare Publication (罕情) An annual publication providing information and resources for rare disease patients, families, and caregivers.
• Human Library School Sharing Program (「罕故事」學校分享計劃) An educational outreach program where rare disease patients share their stories in schools to promote understanding and awareness.
• Healthcare Supplies and Services Subsidy Pilot Scheme (護理物資及服務資助先導計劃) A pilot program providing subsidies for healthcare supplies and services to eligible rare disease patients.
• World Rare Disease Day Seminar (世界罕病日研討會) Annual seminar held to commemorate World Rare Disease Day, bringing together patients, medical professionals, and stakeholders.
• Rare Disease Wiki (罕病小百科) An online encyclopedia providing information about various rare diseases for patients and families.
• Rare Disease Bookshelf (罕病小書架) A collection of educational materials and resources about rare diseases available for reference.

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

Two partnerships are on record, tiered core.

• International rare disease patient organizationscoreStrategic or Co-development PartnerRDHK connects with international rare disease organizations including Taiwan rare disease groups for knowledge exchange, cross-regional collaboration, and sharing best practices in patient advocacy. The organization maintains Global Links section for international connections.
• Hong Kong medical institutions and universitiescoreOthersThe organization has an advisory board comprising medical professionals from HKU, CUHK, Hospital Authority, and other healthcare institutions who provide medical expertise and research collaboration.

Scale indicators4 records

Recent moves7 records

Expansion highlights5 records

Broad incumbents

• Global Genes: US-based global rare-disease advocacy and education organization. Comparable in advocacy, education, and community-building role, though Global Genes operates more as a connector/resource hub across multiple diseases globally rather than a regional service provider.
• National Organization for Rare Disorders (NORD): US-based umbrella patient advocacy organization for rare diseases. Most analogous to RDHK in mission (umbrella for all rare diseases), programs (patient registry, drug reference, advocacy), and membership-based structure, but operates at a national US scale with a much larger budget and professional staff.
• EURORDIS - Rare Diseases Europe: European umbrella federation of rare-disease patient organizations. Directly comparable in function (umbrella for rare-disease patient groups, advocacy, registries, drug access policy), operating across a multi-country region rather than a single city/state.

Others

• Orphanet: International reference portal for rare diseases and orphan drugs. While not a patient advocacy body, Orphanet is the closest analog to RDHK's Rare Disease Wiki and Hong Kong Drug Reference List functions and an enabling reference for RDHK's content offerings.
• Hong Kong Alliance of Patients' Organizations: Hong Kong-based coalition of patient organizations (not rare-disease specific). Relevant local ecosystem peer — RDHK interacts with this umbrella, and it represents the broader patient-organization landscape in which RDHK operates.

Regional players

• Korea Organization for Rare Diseases (KORD): South Korean national rare-disease patient alliance. Comparable in function (umbrella patient advocacy, registries, subsidy navigation), operating in a higher-budget Asian market with closer ties to government healthcare policy.
• Taiwan Foundation for Rare Disorders (台灣罕見疾病基金會): RDHK's most direct regional peer — a Taiwanese rare-disease patient advocacy organization with a comparable service mix (subsidy programs, patient support, education, advocacy). RDHK already conducts exchange visits with TFRD, evidencing operational comparability.
• Rare Disease Society of Singapore: Singapore-based rare-disease patient advocacy group. Closely comparable to RDHK in scale (small-city, English/Chinese-speaking patient base, advocacy focus), although RDHK has a larger member base and broader service portfolio.

Direct peers

• Rare Voices Australia: Australian national peak body for rare diseases, focused on policy advocacy and patient organization support. Comparable in mission and structure (membership-based alliance, drug access advocacy, government relations), though operating at national scale.
• Canadian Organization for Rare Disorders (CORD): Canada's national alliance for rare-disease patient organizations. Closely comparable in scope (national umbrella, policy advocacy, member patient groups), size, and revenue model (membership, donations, grants). Useful peer for benchmarking fundraising and advocacy outcomes.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/rdhk

Revenue estimate

Valuation estimate

Number of profiles

Profiles10 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Rare Disease Hong Kong (RDHK)