Beyond Achondroplasia

Growing together with Clara

5 Comments

  1. I have a grand-daughter who has achondroplasia. I studied a lot of literature before but found some new information on your web-site. Thank you!

  2. Thank you for this very informative website. We have a 4 year old girl with Achon. We are very interested in the Biomarin trial.
    The story of Clara is very like our story.

  3. This may be a long shot here, but I cannot find any information on my question. If a child has had growth hormone treatment in the past, will they still be able to take one of the drugs in the clinical trials if/once they become available? Or does taking the growth hormone make that not an option in the future.

  4. my name is jan and my granddaughter was supposed to be on the trial in mo.her dr ask us to call to get put on the list, we did and never heard from anyone, finally we got to talk to a lady that is doing the assist in mo. she never put her on the list and is now telling us the chapter is closed, is there any place else we could take her, I know there has to be other places we would love for her to get this med, we were so excited about her getting in the trial, I sure would like to know who dropped the ball, we sure are very disappointed, please can you help us, thank you for your time, jan beeney waiting to hear fro yall

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