Aim: Collaborate with civil society, and the rare community, to ensure greater awareness and networking platforms for rare diseases in South Africa.
Community is everything to a newly diagnosed patient. Having the resources to refer to, people to chat to, and generally just the notion of finding your village in your new world is life-changing.
Our community engagement activities are all aimed at improving the peer-to-peer support available to our community, and raising public awareness on the plight of patients impacted by rare diseases and congenital disorders.
Create awareness events and campaigns relating to rare diseases and congenital disorders.
Develop and distribute educational material and campaigns for the public and targeted stakeholders
Develop and participate in civil society alliances with linkages to the rare disease and congenital disorders patient journey
(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 for to benefit those without it.
#Ride4Rare cycling events include Discovery 947 Ride Joburg and Amashova
#Swim4Sadie swim events include Midmar Mile and Sun City Swim
#Run4Rare running events include Old Mutual Two Oceans Marathon
#Care4Rare allows members of the public to volunteer at various events
#Raise4Rare is a platform for fundraising for RDSA
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 #WednesdayWebinars.
Topics are varied, from disease specific discussions with key opinion leaders, to supportive talks aimed at helping patients and families cope a little easier.
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 too be made available in both podcast and video format post event.
Rare Disease Day
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.
The purpose of this conference is 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 around 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.
As there are more than 6800 diseases classified with over 7000 conditions considered rare, as rare, it is more important than ever to build this community.
As the diseases themselves are rare as individual entities, it is crucial that the rare diseases community actively engages together with the topics. With oral presentations and keynote addresses by leading practitioners, innovative, controversial, and relevant topics will be discussed, complemented by a professional exhibition and networking to further facilitate the dialogue and support. Additionally, recent and late-breaking research will be presented in the poster sessions, addressing rare diseases and orphan drugs. The learning continues in the various sponsored symposia addressing current research and developments achieved.
Public awareness is important to increase enthusiasm and support, stimulate self-mobilisation and action, and mobilise local knowledge and resources. Raising political awareness is important as policy makers and politicians are key actors in the policy process of adaptation. Awareness raising requires strategies of effective communication to reach the desired outcome.
Using patient’s storytelling, RDSA raises 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.”
Participants are encouraged to stay after the walk and relax in the picnic area. A market, including arts and crafts stalls and food stands will offer visitors an area to relax, indulge in a culinary spread and browse an array of collectables.