Siblings Series - Hear It From Us

Rare medical conditions can have a profound impact on the lives of those who are affected by them. While much attention is given to the individuals who live with these conditions, it is important to recognize the significant influence that rare conditions can have on their families as well.
Siblings, in particular, can experience unique challenges as they navigate their relationships with a brother or sister who has a rare condition. They may feel a range of emotions such as love, worry, frustration, and even guilt. They may also face additional responsibilities and pressures that come with being a sibling caregiver.
In this video, we will hear directly from siblings of individuals with rare conditions as they share their perspectives on how their family has been impacted. They will share stories of resilience, love, and hope, as well as struggles, and difficulties. These experiences and insights can help us better understand the importance of support for families affected by rare conditions. It is our hope that this video will help raise awareness and promote empathy for those who face these challenges daily.