Enfermedades Raras: “5to Cumpleaños”

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As you may know, we recently shared an educational video very close to our hearts that focused on sharing facts about rare diseases, this video is targeted for kids in schools, our goal is to get this important information to the young crowd. After getting such great feedback and attention, we decided to add Spanish subtitles to the piece so we can open the possibility of getting more eyes on it, coincidentally Patty Weltin told me she was teaming up with an organization in Mexico that works with rare diseases, so the subtitling paid off right away.

The more we work with Patty, the more I find myself reading and learning about rare diseases, the more I feel for the families that are affected. I often think about how your life must change in the blink of an eye, all of your energy must go towards finding out what’s going on, and in the best case scenario that you do get a proper diagnosis, now you have to reshift all your energy and efforts to make your loved one feels better, which will turn into a full-time job.

I hope we are able to tell stories about the families, how they deal with it, how they cope, how they go about their lives. It can be interesting to see someone dealing with a rare disease (as a family member) giving some positive encouragement to people that are new to this, families that are really struggling to figure their new life out. There’s so much we can do by using video as a teaching tool, I’m very excited about what’s next, we are already starting to work on the next video, we’re taking on the odyssey of finding the right diagnosis.

Check out their website rarediseaseunited.org and learn more, donate if you can or just help out by sharing the videos on The Rare Education Reel channel.

Patty was recently on the Rare in Common podcast, produced by Cambridge Biomarketing, here is her episode

Here is the subtitled version