Report from Uganda asking for advise/support

CdLS World federation Council


The report below is copied directly from the email received from Uganda. We Kindly ask you to read it and leave your comment advise in the comments.

Note that we, as your Council Executive team, struggle to find the right approach to this group as the report came with 45 pictures of clearly disabled (mostly children) people, but that we doubt that they could be diagnosed with CdLS

foto from Ugandafoto from Ugandafoto from Ugandafoto from Ugandafoto from Uganda


In Uganda the Cdls program was established in 2009, by two people with disabilities who got concerned after learning and sharing experiences and ideas from different Cdls international families, parents, care takers and professional doctors who participated in the 2009 Cdls International Conference which was held in Brighton, U.K.

The members came up with the ideas of also forming an Organization of the some kind because there are a number of children herein Uganda who are affected with the syndrome and their parents / care takers and the community at large are unaware of the syndrome and don’t know how to treat them. Thus, they decided to form a Non-Governmental Organization as Cdls Foundation Uganda. It started by mobilizing parents/ care takers of children affected with the syndrome as the first beneficial members and at the same time mobilizes Professional Doctors and health workers to be part and partial to the Organization as Executive Board members.


To promote out-reach programs, support, providing help and giving hope to parents and care takers of children affected with Cornelia de Lange Syndrome.


To disseminate information to families who need it specifically and also liaise with International and Local Professional doctors who can give treatment to the Cdls.

This report gives an account of the outreach programs conducted by Cdls Foundation Uganda, what the foundation has so far done, major challenges

and how the foundation can possibly be helped by Cdls International member countries.


  1. The ministry of Internal Affairs has approved a renewal certificate and work permit for 5 years.
  2. Cdls foundation Uganda has negotiated with Dr. Mutiti Alfred as one of our partners. He works with UNICEF and had picked interest in cdls Foundation Uganda programmes as one of the partners. He is still constructing a 5 star Hotel in Mukono where our (cdls Foundation) head office is found.
  3. One Nsamba Joy has joined cdls Foundation Uganda to carry out the districts of our program. She is a senior Nursing office working at Mukono Health Centre IV one of the senior personnel at the Health facility in our area.
  4. We have managed to get some wheel chairs which were given to the needy with disability and other some crouches. In such events, we get a chance to sensitize the community about children with cdls syndrome.
  5. The Deputy Mayor Mukono Municipality came to pay a visit and promised to give help to children affected by cdls syndrome.
  6. Nursing consultancy service International in partnership with cdls foundation Uganda to train Nurses at Diploma Level.


i) An income generating activity is needed especially agriculture because Uganda is an agricultural country, such that some are used for food other may be used for income generating. There was one organization which was willing to supply (us) cdls with food but we failed to get because shipping was very expensive shipping 20ft container was £5000 – 7000, 40 ft was £ 150,000. The organization was called “Feed my staving children “USA” Website

As we follow up children with cdl we have noticed other children with cebral pulse and they are on the increase Please advise us please if there is a specialist kindly link us.

ii) Lack of transport: Transportation is hard during outreach programmes since we don’t have a vehicle. In that it becomes difficult to transport children from villages to health facilities for treatment and daily monitoring of the children and the programme sensitization too is a problem.

3. Sensitization clothing, Education and Medication cdls children are still challenging as all involve putting in some money, which funds are not enough.


information Continues sensitization about cdls syndrome to Doctors, Professors, Nurses, Politicians and schools

(ii) Cdls foundation Uganda would kindly wish to request for a volunteer to equip us with knowledge e.g. Dr. Morse Mary

iii) We are organizing to prepare our International cdls awareness day due to take place on 12/5/2018

One of the cdls Educator.

4. To build a rehabilitation centre

This would include :-

Research Centre, Vocational School, Health centre, A genera school.

5. To acquire a big piece of land for our project.

6. To host cdls World conference in Uganda.

7. Cdls foundation Uganda is still struggling to fulfill the criteria to become a number of world federation.


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