Ambassador Message

Truths People with Rare Diseases wish others understood

  1. You don’t have to look sick to be sick.
  2. It’s lonely, we’d love a friend.
  3. Just because you’ve never heard of a condition doesn’t mean it not serious.
  4. Just because I’m smiling doesn’t mean I didn’t spend my morning in tears.
  5. I’m not making it up, I’m terrified.
  6. We may look “normal” but the pain is real.
  7. “Benign” doesn’t mean “harmless”.
  8. You don’t have to get it, you just need to accept it.
  9. Sometimes even doctors have never heard of our condition.
  10. It’s not “all in my head”.
  11. I don’t want pity. I want awareness and an eventual cure.
  12. I have good days, too.  And on these good days, I’m happy.  I’m alive, I’m going to live, not just exist.


Member of the press.  I would like my message to be a monthly column (350 words) in your newspaper.  Each truth could be a small article.  I am not a psychologist neither a sociologist.  I can present my truth and my feelings.


Awareness about Rare Genetic Disorders, should be on a monthly basis and I ‘m willing to put the work. Are you willing to give me the job?


You could contact me:

Alone we are rare, together we are strong.

Chairman Message