The future may be uncertain, but it can still be filled with hope. There are ways you can plan for your individual future and contribute to a better and brighter future for the whole rare community, including those yet to come. Below, learn about opportunities to plan, participate, and make an impact for future generations.
Rare Experiences
Read the rare experiences of remarkable advocates and the researchers, renegades, and the ready to roar out loud.
Taylor
Adrenoleukodystrophy (ALD)“For as long as I can remember, what motivated me to become an advocate was knowing that through advocacy and through helping others, I would be honoring my dad. It also helped me cope with my loss.”
Rachel
Partial Trisomy 9“After answering questions like, ‘Tell me something that you’re proud of. What are you enjoying about your child? What makes them laugh?’ parents were saying, ‘I am now seeing my child through a different lens. I am seeing how my child is developing. Not only in the realms of speech and language, but of character and personality.’”
