Africa-Rare.Org : African Alliance for Rare Diseases

by Kelly du Plessis

To develop a joint initiative of African partners for the advancement of recognition and treatment of Rare Diseases in Africa.
Sunninghill, WY United States Rare Diseases Patient Education

All Team Company Patients Physicians Hospital Partners Innovation Details Supporters Comments Updates

About our project

The problem we solve: Why the need for an African Alliance for Rare Diseases: Africa as a continent remains the most vulnerable. Due to global issues such as poverty, hunger and limited financial stability, health issues have a high impact across the continent. The high presence of communicable diseases such as HIV/AIDS, Tuberculosis as well as the presence of Malaria create further access issues for those diagnosed and affected by rare conditions, as funds and resources are limited. Africa remains the continent with the most potential for rapid growth in the treatment of rare conditions. Due to the limited access currently available, many patients remain treatment naive which creates great interest for clinical trials. More than this, there is a far greater opportunity for industry investment due to the area being relatively untapped. Due to issues such as socio-economic development, limited access and limited resources, a united front needs to be adopted by the continent.

About our solution: To be a common voice for those affected by rare conditions across the continent and assist in progression recognition and access to treatment.

Progress to date:The Alliance has been formed, and website developed, as well as terms of reference implemented.

About Our Team

Creator: Kelly du Plessis

Bio: I am a patient advocate based in South Africa, who advocates for access to treatment and supportive care for improved quality of life, for those impacted by Rare Diseases across Africa.

Hospital Affiliation: NPO

Title: Founder and CEO

About Our Company

Rare Diseases South Africa

Location: 10 Mirwani Road
Sunninghill, WY 2157

Founded: 2013

Website: http://rarediseases.co.za

Twitter: @RareDiseasesSA

Facebook: https://www.facebook.com/rarediseasesSA/?fref=ts

Product Stage: In the Market

YTD Sales: Less than $250,000

Employees: 3-5

How We Help Patients

This alliance will advance both recognition and the treatment of rare diseases across the continent, positively impacted millions of Africans.

How We Help Physicians

Physicians and healthcare professionals will be supported in the ethical decision to treat their patients with rare diseases appropriately.

How We Help Hospitals

Hospitals and medical institutions will have access to best practises and shared knowledge on the treatment of rare diseases.

How We Help Partners

Industry stakeholders and partners will have the benefit of networking and developing policies directly related to improved access and treatment of orphan drugs and supportive care.

Innovation Details

Intellectual Property Summary

This is an open collaboration between members and therefore does not have IP.

Clinical Information

N/A

Regulatory Status

N/A

How we will use the funds raised

The funding will be spent on developing the alliance across Africa, marketing tools as well as creation of patient advocacy tools to benefit all members.

Currently, this project is being facilitated by Rare Diseases South Africa, which is an NPO in itself. In order for the alliance to reach the powers at be at various national departments across the globe, a digital marketing campaign needs to be developed and implemented.

The website is currently very simple but further development is required.

Funding to facilitate a meeting attended by the various countries is also critical.

Thank You

Rare diseases are indivudually rare but collectively common, affecting approximately 350 million people across the globe. Africa is the most vulnerable of the continents when it comes to treating rare diseases due to the large burden of communable diseases such HIV/AIDS, TB and malaria.

A strong, united voice is needed to ensure that those impacted by rare diseases are not left behind, and we need your assistance to develop this collaborated effort.

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