Join Patient Registries to Accelerate Research and Find Treatments for Rare and Undiagnosed Conditions
Empowering Children with Unique Challenges: Strategies for a Fulfilling School and Social Life.
Sharing your child's story of living with a rare condition can raise awareness, build supportive communities, provide medical insights, and much more.
Empowering Parents of Children with Rare Diseases to Navigate the Healthcare System
Helpful tips for parents and guardians on how to find strength and support when raising a child with a rare or undiagnosed condition.
Raising a child with a rare or undiagnosed condition can be a challenging and isolating experience, with parents often struggling to navigate healthcare systems
Discover the secrets of coping with a rare or undiagnosed condition in our latest blog post. Learn how to provide your child with the support they need and give them hope in the face of uncertainty.
involving your child in decision-making can help them better understand their condition and treatments, reduce their fears, and enhance their self-confidence.
The holiday season can be a magical, joyous time of the year. But the holidays can also overwhelm some people. Here are a few tips to help you manage the holiday season and enjoy it!