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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 2025

National Family Caregivers Month

November marks National Family Caregivers Month, a time to honor the compassion, dedication, and resilience of caregivers across the country. Each year, we recognize the millions of individuals who selflessly devote their time and energy to caring for loved ones with chronic illnesses, disabilities, and age-related needs. 

The 2025 theme, Plug-in to Care, focuses on connection—helping caregivers easily “plug in” to vital support tools, trusted networks, and educational resources that can make the caregiving journey less overwhelming and more supported. 

For those in the Complex Lymphatic Anomalies (CLA) and lymphatic malformation (LM) community, this month is especially meaningful. Many caregivers juggle complex medical care, emotional support, and daily responsibilities while often putting their own needs aside. 

Recognizing the signs of emotional exhaustion and learning practical ways to restore balance is crucial as we care for our loved ones. Remember, caring for yourself is not selfish — it’s essential to being the best caregiver you can be. 

Understanding Caregiver Burnout 

Caregiver burnout is more than just fatigue—it’s a state of emotional, physical, and mental exhaustion caused by the prolonged and overwhelming stress of caregiving. When your focus is constantly on someone else’s needs, it’s easy to neglect your own. Over time, this imbalance can lead to frustration, anxiety, and even depression. 

Recognizing the signs of burnout early is key to preventing it. Common signs include: 

  • Feeling constantly tired or drained 
  • Irritability or mood swings 
  • Difficulty concentrating 
  • Withdrawal from friends and family 
  • Feeling helpless or hopeless 

Acknowledging that you are struggling doesn’t mean you’re failing—it means you’re human. The first step toward recovery is giving yourself permission to prioritize your own needs. 

Ask for Help & Accept Support 

One of the most powerful things you can do to manage burnout is to ask for and accept help. Caregiving is not meant to be a one-person job. Reach out to family, friends, neighbors, or members of your support network to share responsibilities. 

Create a list of people you can call on when you need help, and identify specific tasks they can take on—running errands, preparing meals, or simply spending time with your loved one. Sharing the load helps prevent role overload and gives you the opportunity to rest and recharge. 

Prioritize Your Emotional Well-Being 

Caregiving can bring both joy and emotional strain. It’s important to acknowledge your feelings—whether that’s stress, grief, or even guilt—and find healthy outlets for them. Talk openly with a trusted friend, counselor, or support group. 

Setting boundaries is another essential part of emotional well-being. Learn to say “no” to nonessential tasks or commitments that add unnecessary stress. You cannot pour from an empty cup—protecting your time and energy helps ensure that you can continue caring with patience and compassion. 

Time Management for Caregivers 

Managing time effectively is one of the most practical ways to reduce burnout. By planning and prioritizing, you can make your caregiving responsibilities more manageable and still carve out space for your own life. 

Here are some helpful time management tips for caregivers: 

  • Use your high-energy hours for the most important tasks. 
  • Create daily and weekly to-do lists with realistic goals. 
  • Break large tasks into smaller, manageable steps. 
  • Prioritize what truly matters—and let go of what doesn’t. 
  • Delegate responsibilities where possible. 
  • Establish routines to create consistency and reduce stress. 
  • Use online calendars to coordinate help from others. 
  • Schedule personal time each day for rest or reflection. 
  • Learn to say “no” when your plate is full. 
  • Celebrate accomplishments—crossing tasks off your list can be motivating. 

These strategies can help bring structure and balance to your days, ensuring you have time not only to care for your loved one but also for yourself. 

You’re Not Alone 

Support for caregivers is available, and connecting with others can make the journey less isolating. The Caregiver Action Network offers free education, peer support, and tools to help you manage stress, prevent burnout, and strengthen your caregiving skills. 

Learn more and access caregiver resources at the Caregiver Action Network

This National Family Caregivers Month, we honor the incredible caregivers in the CLA community and beyond. Your dedication makes an immeasurable difference every single day. Take this month as a reminder to care for yourself, too—because your well-being matters. 

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