Rare Disease Awareness Program – China – Hong Kong (AMSAHK)

Name of the activity: Rare Disease Awareness Program

Country/NMO: China – Hong Kong (AMSAHK)

Program: Children Health & Rights

Contact information: [email protected]

Type of the activity: Education

General description:

Our event’s objective was to improve the visibility, perception, awareness including knowledge of rare diseases with a regional focus in Hong Kong. We aimed to introduce the topic of rare diseases to medical students in Hong Kong through hand-on experience with children and engaging with speakers to gain insight from both a medical professional’s perspective and a patient’s perspective.

Focus area:

Early childhood diseases (pneumonia, malnutrition, diarrhoea, etc)

Problem statement:

Rare diseases are diseases which affect a small portion of the population – there are over 7,000 different rare diseases and in the U.S a disease is rare if it affects less than 200,000 people (definitions vary slightly per nation). Due to the large number of rare diseases and low prevalence of each, there is a lack of awareness for these diseases, locally and globally, which is reflected in their low coverage in the Hong Kong Medical Curriculum as well as in the global shortage of funding towards research for treatments. For example, in Hong Kong there is a lack of news coverage on rare diseases in general and the public deliberation over allocating government funding towards drug- development subsidies for rare diseases in May 2017. We believe that we first need to address the medical student population – to equip them with knowledge and exposure while raising awareness so they can make changes within society through their actions and beliefs.

Target groups and beneficiaries:

All Medical Students in Hong Kong from both universities: The University of Hong Kong, The Chinese University of Hong Kong

Objectives and indicators of success:

1) Engage over 1500 persons through our social media awareness raising campaign (Number of views, likes, reactions, and shares on AMSAHK Facebook page of our online campaign via Facebook analytics)
2) Provide interested medical students with an opportunity for first-hand art therapy experience (Number of medical students that signed up for the art therapy session and who attended the event)
3) For medical students to obtain basic knowledge about rare diseases (Difference in self-evaluation points between our pre-event and
post-event surveys which used self-assessment to gauge
one’s self-perceived knowledge level)
4) Improve participants’ perception about rare diseases through direct
interaction with rare disease children (Difference in self-evaluation points between our pre-event and post-event surveys which used self-assessment to gauge one’s attitude towards the topic of rare diseases)
5) Increase visibility of existing opportunities to volunteer for the Joshua
Hellmann Foundation for Orphan Diseases (JHF) among the local medical student community (Number of interested students to engage with rare diseases outside the classroom, including but not limited to volunteering at the JHF)

Methodology:

To evaluate the success of the event, we would conduct a pre-event and post-event survey to assess the impact of our event through participant’s self-evaluation on their perception and attitude towards rare diseases as well as their knowledge about rare diseases.

Plans for evaluation:

In our Pre-event and Post-event survey, we asked participants to evaluate different statements and self-assess their values by rating their level of agreement from 1 to 6; 6 being in full agreement while 1 being in full disagreement. This was done to judge their perception and attitude towards rare diseases. In order to compare the outcomes of the event to our indicators of success, only the surveys of the participants who have completed both pre-event and post-event surveys will be included in our analysis.