In response to the World Rare Disease Day (WRDD), RDHK launches different programmes or activities every year to support this annual event that more and more regions are participating in.

The year 2024 marks the 10th anniversary of the founding of RDHK. To commemorate this important milestone, RDHK has leveraged this milestone to launch a rare disease awareness campaign which commenced on WRDD, i.e. on 29 Feb with the aim of increasing knowledge and awareness of rare diseases among the general public, especially key stakeholders, in order to raise the diagnosis rate, encourage policy makers to increase access to services and fund research into rare diseases, and reduce the feelings of isolation or the discrimination faced by patients and caregivers.

Rare Disease Awareness Campaign 2024 included:

1.  Production of a video titled "Making the Unseen Seen"

• 1.1. The video was published on RDHK’s website, Facebook, Instagram, LinkedIn and YouTube on 29 February 2024, having reached over 862,000 people.
  
  

2.  Publication of a compilation book titled《罕見病•同理心》

• Partnering with Enrich Publishing, the book compiling all the Chinese articles publsihed on the weekly column named 《罕罕而談》 in the Oriental Daily News between April 2023 and March 2024 was published in May 2024. Topics include an introduction to what rare diseases are, stories of the challenges and struggles of people living with rare diseases, the latest treatments for certain rare diseases, and a review of rare disease policies.
• To promote the book and arouse public concern over rare diseases, a patient sharing session was arranged on 21 July during the Hong Kong Book Fair 2024. The stories of patients and caregivers reflected the three difficulties that patients with rare diseases often face: the difficulty of diagnosis, the difficulty of treatment and the difficulty of medication.
• The book is available at major bookstores, Enrich Culture's online shop and Bookniverse. RDHK bought back 1,000 copies of the book and distributed them free of charge to members attending RDHK's activities, all secondary schools in Hong Kong, relevant government officials, healthcare professionals, experts, scholars, pharmaceutical companies, patient organisations and social welfare agencies.
  
  

3.  Expansion of "Rare Disease Wiki" on RDHK's website

• With information on different rare diseases collected from reputable online information platforms, RDHK compiles the “Rare Disease Wiki” for public reference. In August 2024, the number of entries in the "Rare Disease Wiki" has increased from 66 to 86, with the addition of 20 new rare diseases including:
  
  

1) Congenital Insensitivity to Pain with Anhidrosis (CIPA) (先天性痛覺不敏感症合併無汗症)
2) Cushing’s Syndrome 庫欣氏症候群（CN）
3) Ehlers-Danlos Syndrome (EDS) (埃勒斯-當洛二氏症)
4) Epidermolysis Bullosa (EB) (表皮溶解水皰症)
5) Facioscapulohumeral Muscular Dystrophy (FSHD) (面肩肱型肌肉營養不良症)
6) Glioblastoma Multiforme (GBM) (多形性膠質母細胞瘤)
7) Glycogen Storage Disease Type Ia (GSD Ia) (肝醣儲積症第1a型)
8) Glycogen Storage Disease Type IV (GSD IV) (肝醣儲積症第六型)
9) Kennedy’s Disease (甘迺迪氏症)
10) Mesothelioma (間皮瘤)
11) Mitochondrial Cardiomyopathy (MCM) (線粒體心肌病變)
12) Osteogenesis Imperfecta (OI) (成骨不全症)
13) Pemphigus Vulgaris (天皰瘡)
14) Phenylketonuria (PKU) (苯丙酮尿症)
15) Prader-Willi Syndrome (PWS) (普瑞德威利症候群)
16) Spinocerebellar Ataxia Type 3 (SCA3) (小腦萎縮症第三型)
17) Stiff Person Syndrome (SPS) (僵硬人症候群)
18) Williams Syndrome (WS) (威廉斯氏綜合症)
19) Wilson's Disease (WD) (威爾遜氏症)
20) Xeroderma Pigmentosum (XP) (著色性乾皮症)

• The Chinese translation service for the above 20 rare diseases was provided by Enter-Link Limited.

Special thanks to the following companies for their support of this project (in alphabetical order)：

• Amgen Hong Kong Ltd.
• AstraZeneca Hong Kong Ltd.
• Bayer HealthCare Ltd., Hong Kong
• Biogen Hong Kong Ltd.
• BioMarin Pharmaceutical Inc.
• Boehringer Ingelheim (HK) Ltd.
• GlaxoSmithKline Ltd
• HutchMed (HK) Ltd.
• Kyowa Kirin Hong Kong Co. Ltd.
• Lee's Pharmaceutical Hong Kong Ltd.
• Merck Sharp & Dohme (Asia) Ltd.
• Novartis Pharmaceuticals (HK) Ltd.
• Roche Hong Kong Ltd.
• Sanofi Hong Kong Ltd.
• Takeda Pharmaceuticals (HK) Ltd.