Africa Rare Disease Alliance

28/07/2020

"Insights and dealing with trauma relating to Cleft and Craniofacial during lockdown - a combined medical and parent approach"

01/11/2019

Have you heard of Multiple Sclerosis?

These pictures say a thousand words

24/02/2018

The rare disease community remains vulnerable in South Africa despite robust legislation and our constitution which advocates for the right to appropriate care. We need to lobby collectively for improved access and services for our community.

A simple click will assist us in doing so. Show your support by visiting https://www.thunderclap.it/projects/68345-recognize-rare-diseases-in-sa

I just supported Recognize Rare Diseases in SA on //

13/05/2017

Check out the great work done by Diseases Kenya for rare disease day. https://youtu.be/fKcttSZdVPA?t=1m22s

28/02/2017

Bordis - the rare disease organization in Botswana, officially launched today on !

20/02/2017

Rare Disease Kenya along with Muscular Dystrophy Society Kenya are hosting their event.
and would like to extend you, your family, friends and colleagues an invitation to join them in celebrating this day on Saturday 25th February, 2017 at Gertrude’s Children’s Hospital, Muthaiga at there free event from 9am-1pm.

Their special feature this year is documentary screening of “On Beauty” about genetic conditions. We look forward to your attendance and welcome you to share this event with your networks. Fun activities for both children ( we have volunteers to help with the children) and adults are planned as we learn, engage and celebrate RDD 2017.

30/01/2017

Check out our Rare Disease Day initiatives

2017 marks 10 consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2017 puts the focus on the daily lives of 

24/01/2017

We are looking for individuals passionate about public health policy and rare diseases to assist in the board development of the recently formulated Africa-Rare.org, a rare disease alliance set up to ensure Africa is not left behind in terms of international policy. For more information on the available portfolios, or CV submission please email info@africa-rare.org

African Alliance for Rare Diseases A joint initiative of African partners for the advancement of recognition and treatment of Rare Diseases in Africa Africa-Rare is a Rare Diseases South Africa initiative. SHORT TERM VISION To establish networks and connections with members from various African co...

20/01/2017

Whats news at Rare Diseases SA

Paediatric Conference - Feb 24-26th This is coming up in Gordon’s Bay, Cape Town and Kelly has been invited to present on Rare Diseases. We can’t wait to hear the feedback from this event.

02/12/2016

Our first discussion taking place in Kenya with Multiple Sclerosis Association of Kenya - MS Kenya and Dr Dion Opperman.

27/10/2016

We have approached MedStartr to assist in crowdfunding the Africa-Rare.Org project to:
- develop the alliance across Africa ie: marketing tools as well as creation of patient advocacy tools to benefit all members.
- In order 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 needed.
- Funding to facilitate a meeting attended by the various countries is also critical.

Please consider assisting us with this project, either by donating if you can (no amount is too small), or by sharing it with others.

http://ow.ly/WHUr305AFZB

To develop a joint initiative of African partners for the advancement of recognition and treatment of Rare Diseases in Africa.

09/08/2016

A poem written by the founder of Diseases Kenya
Of Heart and Tears
She looks down at the child sleeping on the hospital bed
Her heart crying for the pain he goes through
Her tears cleansing her face of the sorrow she can’t quite let go of

She looks up above to the one she believes in
Her heart aching with desparation and need
Her tears saying what her mouth cannot utter

She looks around the room .. At the people surrounding her
Her heart swells with joy and gratitude
Her tears runneth slow and sweet

For no matter how hard this special needs journey is .. She knows she will not walk it alone.
(Written by )

23/05/2016

22/05/2016

The miracle life of Africa's Progeria patient.
http://buzznigeria.com/africas-first-child-with-rare-aging-disease/

Out of only about 80 children around the world diagnosed with Progeria, a rare aging disease that makes the body age rapidly, is South African Ontlametse Phalatse. She is The first black child with…