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Aware Of Angels advocates for children who have genetic, rare or undiagnosed disorders.  An accurate and conclusive diagnosis for these children will not only give direction for proper treatments and improve their quality of life, but in some cases it may save their life.  By sharing their stories and images, we are advocates for families to the medical and research fields, as well as connect families in similar situations. These children desperately need treatments, cures and answers. Rare/Undiagnosed diseases collectively affect millions of children. They often are serious, debilitating and life altering; many are life threatening or fatal. This is why they need your help.

  • Approximately 50% of the people affected by rare diseases are children
  • 30% of children with rare disease will not live to see their 5th birthday
  • Rare diseases are responsible for 35% of deaths in the first year of life
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease
  • Many affect children at a very early age, and are of genetic origin
  • Life-threatening and/or chronically debilitating diseases
  • 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear

 

Recurrently a child will go without a diagnosis because they need genetic testing to find answers. These tests are expensive and often not covered by insurance and to costly for out-of-pocket. Families can go years without the answers they are looking for, or sadly, they never get the chance for a diagnosis.  We believe genetic testing needs to be affordable and/or covered by insurance. In addition, for true research, family members of an affected child also need the option to be tested under insurance or at a reduced rate.   Aware of Angels hopes to raise awareness and research opportunities for our undiagnosed angels.

Rachel

Aware of Angels will connect families that have children with similar/same disorders. Parent to parent support is greatly needed. There is relief and comfort in knowing that someone else has been through a similar experience. Advice, experience and words of comfort from another parent are reassuring and much appreciated.

So many of these children are affected with rare syndromes; most of these children need someone interested in their condition to carry out research. We need cures, treatments and possible prevention. A cure for genetic disorders may not come easily but treatments are very much needed.

  • According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment
  • During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined
  • According to the National Institutes of Health Office of Rare Disease Research, approximately 6% of the inquiries made to the Genetic and Rare Disease Information Center (GARD) are in reference to an undiagnosed disease
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

With fine- tuning of genetic testing, the near future is going to be flooded with newly discovered genetic disorders. Hopefully the medical field can catch up with, keep current on, and be able to help children with their symptoms such as seizures, muscle weakness, speech/hearing problems, developmental delays, behavior etc. We are here to help raise awareness for these newly discovered disorders.

  • If all of the people with rare diseases lived in one country,  it would be the world’s 3rd most populous country
  • There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
  • 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population

Preston

Articles for journals and case studies need to be written for these disorders and published quickly. The families of children with common syndromes need  accurate, updated information on their genetic disorder. The families of newly discovered/recognized genetic disorders will require accurate information gleaned from additional research. In the community of children with “rare” disorders, we often feel that they are overlooked by research organizations and the medical industry. Often a child is the only one with a rare condition, other times they are 1 in a 100 known cases in the world or 1 in 1000 worldwide; and we feel they are just as important as those in a larger group. We want them to be recognized. Often when a child receives a diagnosis, a doctor explains that because it is “rare” or because it is “genetic” there really isn’t much more he/she can do. Available treatments can be offered at-best to provide some temporary relief for the child but may not be a permanent answer.  Many of these rare diseases CAN be treated and some of them cured if diagnosed early on! The literature that is handed out to families when they are told a diagnosis is often incorrect, incomplete or unavailable.

We hope to use our images to show others that these rare angels are more than just a patient. They are kind, loving, full of personality and part of a family who cares for them and their quality of life. They deserve our full attention. There is so much potential for discovery when we share our information and make those connections. Our images can speak to others and create this global awareness.