For those families with a loved one diagnosed with Krabbe disease, KrabbeConnect understands the diagnostic journey and the fight against the feeling of isolation. Often times, this journey took place due to the rarity of Krabbe disease coupled with the lack of knowledge among healthcare providers. At KrabbeConnect we aim to ease this burden by connecting you with a Family Advocate Specialist (FAS) who is well informed in the following areas:
- Dealing with the initial shock; never hearing of the disease until now
- Experts in the field of Krabbe disease
- Special needs and medical equipment
- The impact of the disease on a family
Disclaimer: Our Family Advocate Specialists are former or current caregivers of a Krabbe patient’s. Our hope is their insights will assist you in having informed and purposeful conversations with your healthcare provider. This resource aims to create a safe space in which people can interact and seek support knowing that they are supported by people who have gone through a similar experience. Any conversation with an FAS should not be considered medical advice.