Community Engagement is an important and necessary channel within the rare disease community to ensure patients feel better supported throughout their journey. Feelings of isolation and abandonment are synonymous with rare diseases and congenital disorders, and RDSA aims to overcome this by creating awareness and platforms in which our community can connect and support one another.
(R)aising (A)wareness through (R)ecreational (E)vents ACTIVists programme is aimed at all those wanting to assist us in raising funds and awareness for our cause, our patients and ultimately the rare disease community. Be it volunteering at an event, hosting a family day, or partaking in one of our many sporting teams and using their mobility to benefit those without it.
Use your mobility to
We know how difficult it is for patients to attend patient meetings / workshops / conferences etc. So, we have found a way to bring the information right to their laps, via our webinar series.
The webinar platform allows ease of access, needing only a smart device with a solid internet connection. Polls, Q and A sessions, and full video functionality are all available, as well as remote recording, allowing the webinars to be made available in both podcast and video format post event.
Topics are varied, from disease specific discussions with key opinion leaders, to supportive talks aimed at helping patients and families cope a little easier.
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
The campaign targets primarily the general public and seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
This conference seeks to provide a forum for all stakeholders within the rare diseases field locally, regionally and internationally to participate in open discussion, enhance models of best practice, and share specialist knowledge regarding rare diseases and orphan drugs. RareX has an extended programme which incorporates patients and their families and caregivers, as well as support groups and minority groups within the rare disease community.
Creating public awareness is important to increase enthusiasm and support, stimulate self-mobilisation and action and to mobilise local knowledge and resources, whilst raising political awareness is important as policy makers and politicians are key actors in the policy adaptation process.
Using patient’s storytelling, RDSA creates awareness using a mix of video, written media and photography in the #AwareAboutRare series. Awareness is a crucial part of advocacy, and aims to educate, change the mindset and ultimately change the critical thinking of the public at large when it comes to rare diseases.
This event takes place annually and is aimed at increasing the visibility of rare diseases and congenital disorders among the public and connecting the community, patients, their families, and support groups, to raise funds and awareness for the rare disease community.
The CEO and founder of RDSA, Kelly Du Plessis says, “The initiative, Genes4Jeans, is a natural fit – both are universal, come in pairs and are unique to the individual. The blue denim genes ribbon is an ideal symbol that expresses solidarity and a powerful way to raise awareness for rare and genetic disorders. Blue is the colour of strength and the blue jeans denim ribbon is a simple concept that anyone can embrace.”