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Advocacy – what is that?


Whilst we are spending the month of Feb re-framing what the world thinks about Rare, we thought we spend just one day re-framing what our followers think about what WE DO, and about advocacy.

What is advocacy? Advocacy is an activity by an individual or group that aims to influence decisions within political, economic, and social systems and institutions.

In our case, we advocate for policy change for rare diseases as a whole. Meaning, we are focused on changing the current laws and policies around patients with rare diseases being able to access healthcare that improves their quality of life, and policies that recognize the plight of rare disease patients in both health and social care.

Advocacy isn’t a quick fix; its not a band aid. Advocacy is the long, hard, often grueling task of applying consistent pressure to policy makers, government and medical aids to ensure that we are not forgotten as a community.

Rare Diseases landscape

How do we do this? We do this by continuous engagement on as many platforms and working groups as possible. This means, we attend meetings, we give public talks, we raise awareness, and we constantly monitor each and every piece of legislation and policy that impacts any form of healthcare. To give an idea of these groups, in the last year we have:

  1. Participated in the Council of Medical Schemes PMB review process (ongoing),

  2. Worked on the Advocacy group of the presidential health summit (signed end of last year)

  3. Participated in the Rare diseases International patient advocacy committee which ensures global alignment for policy issues

  4. Consulted on the new Genetics Guidelines at the department of health (still in progress)

  5. Participated on the African Task Force for Rare Diseases (paper to be published soon)

  6. Co-authored the publication “ A global call for rare diseases in Africa” which was the result of RareX 2016 (available on

  7. Currently working on the Indigenous People task force with the International Research Consortium for Rare Diseases – with the aim of ensuring that our unique data in Africa benefits our local communities and result in targeted treatments

  8. Made representation at the United Nations which resulted in rare diseases being formally included in the Universal Health Care policy which is adopted globally.

Yes, this process isn’t lightning speed, and it’s not visible to every patient, every day. This work may not even benefit our individuals battling with their conditions today. This work slowly moves a needle, so one day, we are recognized as rightful healthcare users and are able to get the treatments we deserve.

Its needs to be noted, that to get onto these working groups and task teams, and to be recognized by the likes of the Presidency as a representative worthy of invitation to these meetings, and to be considered the Key opinion leaders in healthcare, has taken almost a decade of continuous engagement.

Whilst doing all of the above, we have seen the need for patients to be supported as individuals with regards to their personal healthcare needs – which is why we launched Rare Assist. This is a paid for service simply because it requires knowledgeable, dedicated consultants as well as lots of time and communication. The intricacy of this work can be seen in any communication with your medical aid – if it was so easy to get it done, medical schemes would have got your claims processed correctly and medications approved the first time around, without us needing to intervene. We know that funding is always critical in these environment and many of our patients are financially  stretched already, therefore we have made it possible for you to gain sponsorship’s for your premiums, via our fundraising platform, so that 1) your needs are seen to, and 2) we can keep the necessary staff on board to perform this function.

We also know that our patients are people, and all people need love and support. Which is why we have developed our Rare Voices programme. This programme makes use of our Rare Voices ambassadors to manage community groups and platforms where our patients are able to receive the emotional support and encouragement needed to survive each day. These ambassadors are also critical in terms of helping us shape policies that are best suited for you as individuals by getting your feedback and opinions, as well as raising awareness.

The reality is this: Rare Diseases patients are out there, needing all of the above: Advocacy, patient navigation and community support.

The entire Rare Diseases SA team, from our staff, to volunteers to Rare ACTIVists to rare voices ambassadors are all wanting to make a difference. In an ideal world, we would have moved a million mountains, with 50 staff members full time, and an eager and willing government, with affordable drug prices.

Realistically we too are fighting for survival. We cannot cure or save everyone.

We have 2 full time staff members, and 4 part time employees who collectively support;

  1. over 1600 registered patients;

  2. 700+ caregivers;

  3. 140 support groups;

  4. 500 rare activists;

  5. 79 rare assist members;

  6. 1400+ healthcare professionals;

  7. as well as 80+ Rare Voices ambassadors.

Our government is dealing with their crises, and rare diseases is still not a priority.

Drug prices are often simply not affordable to a developing country. Medical Aids are expensive. State hospitals overburdened. The economy sucks. Resources limited all round.

We are all fatigued. You as patients. Us a team. Donors as our source of our income.

The system isn’t perfect. But we fight on. Every. Single. Day!


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