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Mental Health

Resources

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.

National Family Caregivers Month

November is National Caregivers Month

November marks National Family Caregivers Month, a time dedicated to recognizing the strength, compassion, and resilience of family caregivers across the country. This month, we celebrate the vital role caregivers play in supporting loved ones with chronic illnesses, disabilities, and age-related needs. For members of the Complex Lymphatic Anomalies (CLA) community, National Family Caregivers Month offers a perfect opportunity to honor caregivers and connect with valuable support networks. 

In the U.S., more than half of those providing care do not even recognize themselves as caregivers. As a result, many miss out on resources designed to help alleviate caregiving stress. This year’s theme, "Self-Recognition and Support," emphasizes the importance of identifying oneself as a caregiver to access the tools that can significantly ease the caregiving journey. By recognizing this role, caregivers can find the support needed to navigate the emotional and physical demands of caring for loved ones. 

How to Get Involved and Access Resources 

This National Family Caregivers Month, Caregiver Action Network (CAN) has developed resources tailored to caregivers’ needs. For families and caregivers in the CLA community, these resources can make a difference:   

  • Caregiver Help Desk – Access free, personalized support for caregiving challenges. Visit the Caregiver Action Network Help Desk. 
  • 10 Tips for Family Caregivers  – Learn practical strategies to help manage caregiving stress effectively. These tips can provide new ways to handle day-to-day caregiving. 
  • Take Care of Your Mental Health – With caregiving often placing heavy emotional demands, CAN offers a free depression screener to help caregivers monitor and prioritize their mental health. 
  • Caregiver Community – Join CAN’s online community to connect with other caregivers, share experiences, and receive support from those who truly understand. Don't forget about LGDA's online communities.
  • Social Media Kit – Spread awareness and celebrate National Family Caregivers Month by sharing your support on social media. Access CAN’s Social Media Kit.

Sharing Stories to Inspire and Uplift 

Caregivers can also share their stories as a way to inspire others and build a broader community of support. Sharing personal experiences can encourage other caregivers, who may feel alone in their journey, to reach out for help and feel part of a larger support network. 

Empowering Caregivers Together 

CAN stands at the forefront of supporting family caregivers across the United States. As the leading family caregiver organization, CAN is dedicated to improving the quality of life for tens of millions of family caregivers by providing free education, peer support, and essential resources. CAN’s impact reaches caregivers from diverse backgrounds, from parents managing a child’s significant health needs to adult children supporting parents with Alzheimer’s disease. 

Visit CAN’s website to explore these and other resources available during National Family Caregivers Month, empowering you with the tools you need to continue providing quality care while taking care of yourself. Remember, you are not alone in this journey. 

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