Resources

CONNECTIONS

RARE CONNECT

RareConnect includes disease-specific online communities that enable people living with rare diseases to meet, share stories and learn from each other. RareConnect helps people who live with rare diseases from around the world to connect by providing different translation services.

GLOBAL GENES

Comprehensive website to connect, empower and inspire the rare disease community. Rare patients can connect with other rare patients through their portal. They can share their stories online and participate in events organized by Global Genes.

THE COMPASSIONATE FRIENDS

The Compassionate Friends is an organization that helps supports parents after the passing of their child.

Association of Child Life Professionals

The Association represents trained professionals with expertise in helping infants, children, youth, and families cope with the stress and uncertainty of illness, injury and treatment. Members include Certified Child Life Specialists, child life assistants, university educators and students, hospital administrators and staff, schoolteachers, therapeutic recreation specialists, and professionals in related fields.

Resources for Patients & Caregivers

The website aggregates and describes the resources from major organizations: NORD, NIH Genetic and Rare Disease Information Center, and several advocacy groups.

Project Sebastian

Project Sebastian provides support, action, and awareness for all families affected by all rare diseases. Rare diseases claim the lives of most children and teens. While most people wait for a cure they have nowhere to turn. We offer a community group support system that can help you deal with so many emotions, questions, and uncertainty. We realize that connecting with other families is essential to this journey. We will provide you with group meetings and counseling so that you can connect with others who are struggling like you.

MINDFULNESS

HEADSPACE

Guided meditation app for sleep, stress, anxiety, and much more.

STRESS LESS CARDS

50 mindfulness and meditation exercises to help relieve stress and anxiety.

MINDFUL MARKS

Temporary wearable reminders for your intentions, help you rise above distractions, calm down and stay present to what matters most.

Crisis Support - Need Help Now?

United States

For immediate help: Call, text or chat the 988 Suicide & Crisis Lifeline at 988.

OR text HOME to 741741 for the Crisis Text Line.

Both services are free and available 24/7.

Europe

Rare disease help lines

Help lines in different European countries that gives support and contact information for rare diseases. The help lines offer social, psychological and information solutions to rare caregivers.