I have to agree that knowing your community is incredibly helpful when it comes to a rare disease diagnosis for yourself, or a loved one. Meeting others with PKU at the conferences I've been to as an adult has been a super transformative experience for me.
Also, I didn't realize rare diseases were so common! All the more reason to share these helpful tips for everyone who can benefit from hearing this.
Thanks! Meeting in person like at conferences is so different from reading about it, and very supportive. Online communities can help too, some rare conditions have groups on different social media platforms and also regular podcasts like "Once Upon a Gene" from Effie Parks, a mom of a child who has a rare health condition.
I have to agree that knowing your community is incredibly helpful when it comes to a rare disease diagnosis for yourself, or a loved one. Meeting others with PKU at the conferences I've been to as an adult has been a super transformative experience for me.
Also, I didn't realize rare diseases were so common! All the more reason to share these helpful tips for everyone who can benefit from hearing this.
Thanks! Meeting in person like at conferences is so different from reading about it, and very supportive. Online communities can help too, some rare conditions have groups on different social media platforms and also regular podcasts like "Once Upon a Gene" from Effie Parks, a mom of a child who has a rare health condition.
So glad this was helpful to you💕