#CareForRare – Rare Diseases Awareness Program

Name of the activity: #CareForRare – Rare Diseases Awareness Program

Country/NMO: China (Hong Kong) (AMSAHK)

Program: Medical Education Systems

Contact information: [email protected]

Type of the activity: Education. Education on health issues for specific societal groups, either in the form of projects (set of tasks for a certain group over a fixed period of time), events (something notable that happens) or conferences (form meeting about ideas related to a particular topic, usually over several days).

General description:

Rare diseases is a much neglected problem in the society, and the medical curriculum. Aiming to bridge this gap, AMSAHK has organized the #CareForRare event to foster understanding of students’ and to spark their interest in Rare Diseases. The event comprises of 3 sections. It opened with a sharing by geneticist Dr Brian Chung, about current research and career prospects in rare diseases. After which was a Human Library sharing session, where students are given the opportunity to interact with rare disease patients and their families. The final part was an art therapy session for both patients and students to foster mutual understanding.

Apart from the event, we also have a social media campaign, where we’ve created and shared info-graphics about rare diseases.

In collaboration with the Hong Kong Rare Diseases Alliance, a selected few medical students will also be given the opportunity to speak at the World Rare Diseases Day Symposium.

Focus area:

Students’ involvement in medical education | Non-formal/informal education

Problem statement:

There are over 7,000 different rare diseases – in the U.S, a disease is defined as rare if it affects less than 200,000 people. According to a study conducted by Dr. Brian Chung in HKU, 1 out of 67 HK residents suffers from a rare disease. Due to the large number of rare diseases and low prevalence of each, there is a lack of awareness locally and globally, reflected by its low coverage in the Hong Kong Medical Curriculum as well as the global shortage of funding towards its research.

Target groups:

General population, Medical students, Healthcare Students, Doctors, Rare Diseases Patients

Beneficiaries:

Medical students, Rare Diseases Patients

Objectives and indicators of success:

Objective1: Increase students’ exposure to and interest in rare diseases

IoS1.1 All participants interact with rare diseases patients.

IoS1.2 All participants attend a talk on the future of rare diseases research

IoS1.3 Participants report an increase in knowledge of rare diseases after the event.

Objective2: Improve students’ attitudes and foster empathy towards patients

IoS1.1 Participants report an increase in motivation for change after the event.

IoS1.2 All participants attend a Human Library sharing session.

IoS1.3 All participants engage in an art therapy session with rare diseases patients.

Objective3: Stimulate the public to think about how rare diseases patients rise above challenges

IoS1.1 Engagement rate (number of likes) on online campaign materials.

IoS1.2 Number of views, users reached, and engagement rate on our videos interviews with rare diseases patients for our social media campaign.

Objective4: Facilitate conversation about rare diseases between different sectors

Ios1.1 Number of attendees at the World Rare Diseases Day Symposium.

IoS1.2 Participants of the symposium attend a talk on “Innovations for Rare Diseases: Technologies and Life” by medical students.

Methodology:

Our activity comprises of 3 main parts – the #CareForRare event, our online campaign, and a collaboration with the HK Alliance for Rare Diseases at the 2019 World Rare Diseases Day Symposium.

Our event opens with a sharing by a geneticist about current research in rare diseases, aiming to spark students’ interest in the field. After this is a “Human Library” sharing session, where students are given the opportunity to interact with rare diseases patients and their families. The final part is the Art Therapy session. A professional art therapist was invited to host a session for both patients and students, furthering our goal of mutual understanding.

Apart from the event we organized at the university, we also have a social media campaign, where we create and share info graphics about rare diseases. We have also made videos of interviews with rare diseases patients during our event, documenting their story with the aim of raising awareness on social media.

Plans for evaluation:

For our #CareForRare event, a pre-event and post-event survey was designed and sent to all participants with questions on: i) Knowledge of Rare Diseases (particularly in HK) and Art Therapy, ii) Motivation for Change, iii) Attitudes towards Rare Diseases by the participant and the perceived attitude of society. Questions of both surveys were mostly identical, so that we could compare answers and see if the workshop has caused any changes. Additionally, a few questions directly asking respondents to evaluate the course were added in the post-event survey, so they can suggest any improvements for our future reference.

For the online campaign, we evaluate the engagement rate by social media statistics such as the number of likes/reactions and comments, as well as informal chatting with medical students on their thoughts about our campaign and rare diseases.