Rare Disease Day 2017 – Kenya

rare disease day 2017-3

We held a successful Rare Disease Day in Nairobi, Kenya on 27th February 2017 at the Gertrude Children’s Hospital. There were many in attendance and diseases represented where Muscular Dystrophy, Multiple Sclerosis, Albinism and Hereditary Angio Edema. Every year we normally have representative speakers from various groups who speak about their challenges and who also encourage us with their wonderful inspirations. We were glad to have for the first time a nominated Member of the Parliamentary Assembly present. He suffers from albinism and has been at the forefront in our Kenya parliament fighting for those with rare condition. The aim of this day was to learn more about other rare disease organizations and how they conduct their advocacy work here in Kenya. Some groups had a short movie as well as a published book where they talk about their condition. They marketed their book to be able to raise funds for their group.

This day was televised on our local TV channel in a programme called Abled Differently and I am glad that I got an opportunity to be a speaker on this televised programme. They have a YouTube channel as well called Abled Differently Season 14episode 12.

At the end of this day we agreed to form an umbrella group for rare diseases in Kenya where all rare disease organizations will be represented. I was honored to be part of the admin of this group. My task is mainly to put together the many people who have rare conditions in one online group so that we can air our views on how best our voices can be heard as a group. This was an awesome day and indeed all the groups present felt rejuvenated to continue with the fight to be heard so as to be able to access affordable medication and therapy as well as continue with the fight for a better future.

rare disease day 2017-5rare disease day 2017-6

I am truly glad to be part of this large group. Indeed when I see children who have physically disabling conditions, I am touched by their strong will to live and their ability to afford a smile. It is my hope that as we struggle to look for more HAE patients in Kenya we may be able to reach all those who feel they are alone and be able to give them hope and get affordable medical therapy for them.

HAE Kenya in HAEi Global Conference held in Madrid, Spain in May 2016!

HAE Kenya was very privileged to attend this great conference which had more than 500 participants involving HAE patients, their care-giver and physicians from all over the world. More than 50cuntries from all over the world where present and Kenya was the first African country to attend the Global Conference. Kenya highlighted the plight of the major challenges faced in the African countries in terms of HAE medication and therapy as well as insufficient knowledge of the rare disease! In Kenya alone there are only 2 confirmed cases and 2 other suspected cases. With the low levels of knowledge that our physicians have on this rare disease, creating awareness will be an uphill challenge for all those who have taken the mantle and are willing to aggressively advocate for this worthy course. The Global conference renewed the courage of HAE Kenya and was a great education forum for our HAE Kenya Doctor. HAE Kenya will strive on with baby steps but it will one day reach a point where there is affordable emergency medicines for HAE patients. Together we strive forward! No looking back!