Rare Disease Day at NIH

Mom starting PosterIMG_5838IMG_5836 Poster New friend SeanOur Table  New Friend  Maria my friend Mr. John Poster at RDD RDD RDD 1 RFRD Table RDD3 RDD2 RDD NIH RDD NIH talking with Dr. Tifft and Gretchen talking with my Dr. Shamburek Team Photo Dr. Zein signing my t-shirtlaughing with Gretchen

Hi my name is Noah Maria Victoria and I am the patient part of Running for Rare Diseases. My wonderful partner is Jon Rayla !!!My parents and I recently participated in Rare Disease Day at NIH . We decided we wanted to represent RFRD at NIH. As you can see with the photos it was a huge turn out . Many did not know of this program , but we made sure they left having a real sense of how it touches so many. My Mom designed t-shirts for us to wear and I made bracelets to hand out. They were all wearing the bracelets by the end of the day. I have a very rare disease and I do not have any organization or support group. This made it possible for me and my parents to finally be a part of something great!

Peace Noah

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4 comments on “Rare Disease Day at NIH
  1. Phil says:

    You are the essence of a true partnership. Thank you for all your efforts bringing awareness to RFRD. You are a very special member of our team and I feel so very fortunate getting to know you.

  2. Nancy Coyne says:

    You did a great job! Thank you!

  3. Cristina says:

    Wonderful job! Thank you for putting this together, Noah!

  4. Pamela Lynch says:

    Great job Noah! The poster looks fantastic, thank you for your work!

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