The associations vision
The association aspires to create a reality in which this rare syndrome is curable and aims towards a world in which the patients’ quality of life will be better and safer without any unnecessary deaths of patients who fall asleep without a respirator.
Our mission is to fulfill the dreams of each and every one of the CCHS patients and their family members, to let them sleep peacefully and safely without fear for their lives each time they close their eyes, nap or even concentrate on TV or video games.
The association aspires to change the reality in Israel in which there is no law that regulates the issue of orphan diseases and motivates the drug companies to manufacture cures to such syndromes. Today, most of the funds for medical research and drug development is provided by pharmaceutical companies that operate solely based on their economic interests.
Currently in Israel, there is no incentive for companies to develop drugs for small numbers of patients since such companies will not be able to recover the huge investment costs in developing the drug. This leads to a situation in which there is no drug development for orphan diseases and the patients futures are left without hope. The association aspires to work with different organizations and associations to drive legislative change. The association aspires to fulfill its vision by fundraising, connecting socially, sharing information, and promoting dialogue between researchers in order to raise awareness of this illness all over the world.