بصدد الإنجاز

Presentation

         1- President speech

         2- Composition

         3- Legal aspect

         4- Objectives

         5- Medical committee

         6- Logo

         7- Inscription

 1- President speech : Mr Noomen Hakim

I am a civil servant, I am married and I have two children. 

Lamia is the youngest, she is an adorable girl.  She is unfortunately reached of Xeroderma Pigmentosum. 

I didn’t react to the first consultation when the doctor announced to me that my daughter is suffering from a rare disease called Xeroderma Pigmentosum, but a concern invaded me when the doctor told me that «God be with you! ". Nobody knows this pathology in my entourage.  Her mother noticed in the first months life that our daughter cheeks were a little red, but this sign has been seen as a sign of beauty and the baby did not like to look directly at the light through the window.  We thought that everything would get better with age.  Then of small tasks started to appear on the cheeks and the face:  Oh!  “As these freckles are pretty”, said the members of family, because her skin is clear. Everything has been considered normal and beautiful. The family doctor had noticed nothing pathological. Then we found that the size and number of the pigments increased; they became profuse, then this started to worry us. By the age of 3, we consulted a dermatologist who made the diagnosis and recommend us the most famous specialist in this pathology in Tunisia.

I was terrified by seeing other patients in advanced stages of the disease.

I could not admit that my daughter, so beautiful, so pretty, so young, could become like them disfigured ... The doctor informed me that if my daughter lived in darkness, her skin remains normal. How? This is the ultraviolet part of sunlight which is responsible? I was lost, I did nothing. No, I do not have to abandon my daughter, I must not lose my daughter, I would not see my daughter off, and I had to do something.

Since then and until now, I am informed and I collect scientific, medical and social about this disease. I also transmit the information to the Tunisian dermatologists so that nothing escapes at the end to save my daughter.

But I fear that the dialogue between patients and specialists is insufficient. Some doctors do this pathology that its gravity, its evolution following the fatal skin cancers are inevitable and disarmed in front of this pathology. Despite advances in medical knowledge very little has been done to save these children.

On the other hand, the dialogue between patients and parents of patients were non-existent.

Parents are terrified, they suffer in solitary, and they exhausted both moral and material. A mother French teacher has left teaching to look after her children with XP and she finally lost his post. The father of another family had been forced to sell his house to ensure the needs of her child medicine. Other parents saw their child melt slowly, cropped by tumors, disfigured following numerous interventions. These are families who often fall back on themselves to live their suffering in silence in isolation because the children were rejected by their entourage.
 
With our action we invite the affected children and their parents to met, with being interdependent between them, in order to transfer councils and information for better managing this disease and to overcome all the difficulties. 

I invite the public to better understand this disease to understand and help these patients to prevent this disease so that patients and families are more isolated and that they fit into society. I wish to clarify that this disease is not contagious. You can run no risk if you touch, eat or drink with them. I invite teachers, educators to be more attentive to these children, ensuring they are far UV. And we are at their disposal to inform and help them acquire the means of photo protection.

When we know the importance of early diagnosis, it is necessary to inform the public about the early symptoms of the disease.

I turn the body to health, doctors, I ask them to be more lenient, more compression, more available and attentive to these children and their families, they need you to give them hope. They need support as their quality of life. When scientists I want to remind them that the cells of our children have served for more than 50 years to understand the pathogenic mechanism of the disease, to decipher the secret of cancer, to better understand genetics and many other channels scientific research. It is time for scientists devote sufficient time and effort and resources to finding solutions for these children. Stem cells, the recovery of the skin grafts of genes are all ways that can help our children. Our hopes and their future are in your hands.  

We wish to thank our partner strongly “Lions club” which has made great efforts to help these children and allowed us to be more sensitive to life and invite other associations and organizations to do likewise.
 
We are doing this with great enthusiasm and optimism, because we believe that by implementing all the defenses we will be able to turn this handicap severely, profound and severe disabilities in light compatible with a normal life. Our actions associated with the generosity of our partners will lift the talents of our children and develop their intelligence through miracles and provide the happiness of our families. Be with us.
 
We hope these pages will help you learn more about this disease and on what we do to better support and recognition of this pathology.

       2- Composition

General secratery: Mr Khaled KORBI
	Rue  Khaled ibn el  Walid 5011 khniss Monastir,  Tunisie Port. +216 98 676 099      E-mail : khaledkorbi@voila.fr

3- Legal aspect

Association declared under the mode of the laws  

- Law N° 154 of November 7, 1959

- Law N° 90 of August 2, 1988

- Law N° 25 of April 2, 1992

Aimed   894 8 the Mars 2008

Sit   

Street of Gabes 16-38 El Mourouj 1 Ben Arous Tunis

Denomination

"Helping xeroderma pigmentosum children"

Category

Association with non lucrative goal of social assistance, support and medical care

JORT   N° 35, of 29 Avril 2008

        4- Association objectives

• Allow affected families to be informed:
    - On disease and its advanced medical care.
    - On how to care, photo protection and what are the measures to take in order to slow the progression of the disease.
    - On how to prevent occurrence of new cases in the family.
• Allow families to communicate with them, help them break the social isolation engendered by this disease and provide support, moral and material help if necessary.
• Advise, assist and help parents and patients to the granting of disability card and receive the social security coverage among different agencies: Ministry of Social Affairs, CNAM, Mutual, insurance, ...
• Allowing children to meet, exchange experience, to support each other, play, grow ....
• Get a real government social care of this disease (repayments, schooling, recreation and culture ...)
• Try to identify with doctors, researchers and professional solutions balancing protection and quality of life.
• In collaboration with the public, doctors and scientists, the association participates in the identification and prevention of disease.
• Help research in developing a gene therapy or other research programs in order to improve care, prevention and understanding of this pathology.
• Raising funds to carry out this mission.

Objectives and priorities

2008-2012

· Information and education of the patients and their parents

· To offer a life space free UV

· To ensure the exemption from payment of the care

· To ensure the means of photo protection

· To offer spaces of leisure’s and formation adapted to their conditions

· To help the people reached to be integrated in the company and into obtaining a work

Evaluation methods

· Censuses, addresses, means of survival

· Assessment specific needs for each patient

· Level of schooling of the parents and the sick children

· Installation of the regional representatives among the parents or the patients...

Estimates

· Chart of handicap:  60 % to 100 %

· Estimate of the number of families:  400

· Stop UV films:  15 m per family

· Sunglasses with UV filter:  600

· LED:  10 lamps per family

· Behaviours conceived especially for these patients

· Photo external protection

· Places of formation and leisure’s free UV:  22

Program over 4 years

                               Calendar of action

 5- medical Committee

        6- Logo

        7- Inscription

A) Members   Patients, parents, or member of family directly concerned: 

Inscription : 

Parents  or member of family directly concerned

Request my adhesion with association "Helping the Xeroderma Pigmentosum children (AAEXP)" as a member.     

Patients

Inscription and Information

Name.............................  First name............................................

Date of birth....................... Birthplace................

Date from the diagnosis (name of the doctor).................................

First name of the father................... Function....................................

School level....................................................

N I C ……………………………….

Name and first name of the mother....................................................

Annual income of the parents.................................

Consanguinity:  1 2 3 > 3

Origin: 

Other cases in the family..........................................

Address...........................................................................

Telephone........................... E mall................................

Insurance:  CI.............  CNAM.............. Others.....................

N°..........................................

Handicap card.....................................................................

If the patient has photoprotection: 

Name of the attending practitioner...................... Tel........................ Email...................................................

Name of the social assistant........................ Tel............................

E mail..........................................................................

Motivation of the parents:  (1 à10).................. (to be filled by the doctor or the social assistant)

Type of habitat......................................

Enclosures: 

- Copy of the handicap card

- Copy of the insurance card (CNAM)

- Chronic Form of disease (delivered by the CNAM)

- Copy C I NR of the father

- Birth certificate

- Photograph

B)  Honorary Members  No matter who can be an active honorary member or not 

Request my adhesion with association "Helping the Xeroderma Pigmentosum children (AAEXP)" as an honorary member. 

C) Partners and sponsors:  Public authority, Individual or moral, association, private or official organization.......