Welcome to our mental health resources page, specially designed for individuals who are navigating the challenges of CLAs while prioritizing their mental well-being. LGDA is committed to fostering a community where you can access the resources and guidance you need to achieve both physical and emotional well-being on your journey.
Supporting the Mental Health Needs of Rare Disease Patients, Families, and Communities: Recorded October 16, 2024 During this session, therapist Dr. Al Freedman (an SMA dad) provides tools and resources for supporting the mental health needs of rare disease patients, families and communities.
A rare disease diagnosis doesn’t just impact the individual—it affects the entire family. The emotional, physical, and mental strain can be overwhelming for patients, parents, caregivers, and siblings alike. Navigating the uncertainties of Complex Lymphatic Anomalies (CLAs) can bring feelings of fear, anxiety, stress, and isolation. That’s why taking care of your mental health is just as important as managing physical health.
Whether you are living with a CLA, caring for a loved one, or supporting a sibling, your mental well-being matters. Finding the right support and resources can help you cope, build resilience, and connect with others who understand what you’re going through.
On this page, you’ll find:
- Reading Material – Articles and guides to help you understand and manage the emotional impact of living with a rare disease.
- Expert Insights – A video by Al Freedman, PhD, a psychologist and rare disease parent, offering guidance on mental health and coping strategies.
- Support Organizations – Links to trusted resources providing mental health support for patients, caregivers, and families.
You are not alone. Support is available to help you through every step of this journey. Explore the resources below and take care of your mental health today.
Here are three recommended resources that provide tailored mental health care for individuals and families navigating complex health challenges:
Rareminds
Rareminds is a pioneering nonprofit organization based in the UK, offering specialized counselling and psychotherapy services specifically for the rare disease community. Established in 2014, Rareminds’ mission is to make affordable, accessible mental health care an integral part of rare disease treatment. Through online counselling and wellbeing services, they support individuals in navigating the psychological and emotional aspects of rare conditions.
Rare Counselling - Dr. Albert Freedman
Dr. Albert Freedman, PhD, is a licensed psychologist with a specialized practice serving patients and families affected by rare diseases and complex medical conditions. With clients across 40 states in the USA, Dr. Freedman provides counselling services designed to meet the unique mental health needs of individuals and families dealing with rare diseases.
Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases.
