Across conferences, peer support groups, patient gatherings, industry trainings, and advocacy partnerships, Give an Hour spent the summer listening to the rare disease community. What we heard reinforced something we have long believed: mental health cannot sit on the sidelines of rare disease care.
Rare disease communities know how to talk about complexity.
They talk about diagnostic odysseys. Treatment. Research. Clinical trials. Access. Advocacy. Care coordination. Genetics. Policy.
But there is another part of the rare disease journey that too often remains beneath the surface: the emotional experience of living it.
What happens when uncertainty becomes part of everyday life?
What happens to a parent who has spent years organizing their life around caregiving when their child becomes more independent?
Where does an advocacy leader go when they spend their days supporting an entire community but find themselves emotionally exhausted?
How does a sibling process growing up in a family where rare disease has simply always been part of life?
What does repeated relapse do to hope?
And who supports the healthcare professionals, patient advocates, organizational leaders, and others who continually show up for these communities?
This summer, Give an Hour had the privilege of exploring these questions alongside rare disease communities across the country.
We joined patients and caregivers at family conferences. We facilitated conversations with siblings and bereaved parents. We trained peer mentors. We worked with advocacy professionals. We listened alongside researchers and clinicians. We helped patient advocacy organizations think differently about how mental health can be integrated into their conferences and communities.
The diseases were different. The audiences were different. The conversations were different.
But one message followed us from room to room: Mental health belongs in every rare disease conversation.
Creating Space for the Conversations That Don’t Always Happen
At the Immune Deficiency Foundation National Conference, Give an Hour joined Amgen and members of the Chronic Granulomatous Disease (CGD) community for a dedicated conversation about the emotional realities of living with rare disease.
It was an opportunity built from an ongoing relationship with the CGD community and a simple premise: within a large national gathering focused on immune deficiency, patients and caregivers also deserve space to find one another and talk about how the experience affects their emotional wellbeing.
Approximately 30 patients and caregivers joined the conversation.
The discussion explored capacity, hope, independence, identity, boundaries, and caregiving.
One participant talked about overworking as a way of compensating for feeling unable to control their physical health.
A mother described setting difficult boundaries after years of caring for everyone around her—and how creating that space ultimately allowed her son to develop greater independence.
Another caregiver spoke about what happened when her son became capable of caring for himself. After years of developing extraordinary skills in caregiving and compassion, she found herself confronting an unexpected question:
Who am I when I am no longer needed in the same way?
These aren’t side conversations.
They are part of the rare disease experience.
And creating intentional spaces for them allows patients and caregivers to hear something extraordinarily important from one another:
You aren’t the only one who has felt this way.
Our work with the CGD community also reflects the value of collaboration between patient communities, advocacy organizations, industry, and mental health organizations. Give an Hour appreciates partners who create space for us to connect deeply with patients and caregivers while also listening to what those conversations can teach all of us about the mental health strategies that improve overall wellbeing.
One Rare Disease Can Contain Many Different Mental Health Journeys
That lesson became even clearer at the TANGO2 Research Foundation’s Family Conference.
Give an Hour’s relationship with the TANGO2 community has included organizational capacity-building, leadership peer support, Trauma-Informed Peer Support training, and mental health strategy.
At the conference, that work expanded across several very different experiences.
Give an Hour presented “Rare and Resilient: Tools & Strategies to Cultivate Hope, Community & Well-Being” to approximately 65 participants.
But the broader experience illustrated why one mental health intervention cannot serve every person within a rare disease community.
Give an Hour also helped facilitate a sibling group.
Thirteen siblings participated, representing different ages, experiences, and relationships to TANGO2.
Some had lost siblings.
Some had older siblings living with TANGO2 and described rare disease as simply part of the world they had always known.
Older siblings wanted opportunities to talk about behavioral challenges and how they could support their families.
These differences matter.
“Siblings” may look like one audience on a conference agenda. In reality, they can carry dramatically different experiences, responsibilities, fears, and grief.
Give an Hour also facilitated a conversation with families who had lost children.
Here, grief intersected with experiences that can be particularly complicated within rare disease: unanswered questions, limited information, carrier guilt, uncertainty, and decisions about having additional children.
Grief itself is not unique to rare disease.
The context surrounding it sometimes is.
That distinction is important for anyone trying to build meaningful mental health support for rare communities.
The conference also created opportunities to speak with geneticists, physicians, and researchers about another emerging need: supporting the professionals who continually work with populations where uncertainty can be the norm.
Mental health support in rare disease cannot be designed as a single intervention for a single audience.
Patients need support.
Caregivers need support.
Siblings need support.
Bereaved families need support.
Advocacy leaders need support.
And the professionals walking alongside these communities may need support, too.
What Happens When Mental Health Is Built Into an Entire Conference?
Our work with the Vasculitis Foundation this summer offered another model.
Instead of treating mental health as one isolated presentation, Give an Hour worked with the Vasculitis Foundation to elevate emotional wellbeing throughout its International Vasculitis Symposium.
Mental health appeared in keynotes.
It appeared in panels.
It appeared in smaller facilitated conversations.
It appeared in discussions with emerging adults.
It appeared in conversations about communicating with physicians.
It appeared when patients and caregivers discussed the connection between their bodies and minds.
And it appeared in a standing-room-only conversation about the mental health impact of relapse.
Across the weekend, Give an Hour delivered multiple keynotes and facilitated or participated in several discussions reaching hundreds of attendees.
But the significance wasn’t simply the number of people reached.
It was the integration.
Rare disease conferences already create extraordinary concentrations of connection, knowledge, and lived experience. Patients may travel significant distances to meet someone who shares their diagnosis. Caregivers exchange information. Researchers present discoveries. Clinicians answer questions. Advocacy organizations build community.
What if mental health were intentionally woven into those experiences, too?
Give an Hour’s collaboration with the Vasculitis Foundation demonstrated several ways organizations can begin doing that: incorporating mental health into conference planning, elevating it through keynotes and panels, hosting listening sessions to better understand what communities want to discuss, and creating points of connection before, during, and after an event.
The goal isn’t to turn a rare disease conference into a mental health conference.
It’s to acknowledge that the people attending bring their whole lives with them.
Giving the Bloom Syndrome Community a Day to Talk About Mental Health
That philosophy also shaped Give an Hour’s work with the Bloom Syndrome Association.
Following months of planning, an entire day of its Patient & Family Conference incorporated mental health.
Give an Hour was invited to lead or facilitate five different experiences:
- Mental Health and Rare Disease: How We Cope, Heal and Support Each Other
- Managing Life with Bloom Syndrome
- The Emotional Impacts of the Diagnostic Journey
- How Emotional Regulation Impacts Your Ability to Advocate
- How to Build the Community You Need
Several sessions reached approximately 110 attendees, while a caregiver peer support conversation created a smaller environment for deeper connection.
Some of the most powerful moments didn’t come from a presentation.
They came from patients.
Emerging adults living with Bloom Syndrome spoke candidly about their own mental health journeys. Parents and caregivers shared moments when they had felt scared or isolated. Families heard experiences that reflected pieces of their own.
That matters.
Professional expertise is important. So is lived expertise.
When both are present, communities can begin building a shared language around experiences people may have carried privately for years.
The conference also created opportunities to introduce peer support spaces for different members of the Bloom community, including newly diagnosed individuals, caregivers, and emerging adults.
Again, one community revealed multiple mental health pathways.
The question becomes not simply, “Does this community need mental health support?”
It becomes: “What kinds of support does this community need and for whom?”
Building the Capacity of Peer Mentors
Mental health integration doesn’t only happen at conferences.
Sometimes it means strengthening the people who are already trusted within a community.
This summer, Give an Hour completed a five-part training engagement with the International Pemphigus & Pemphigoid Foundation (IPPF) as the organization prepared mentors to support newly diagnosed patients.
The series began with trauma-informed communication and expanded into boundaries, role clarity, crisis response, coaching, empowerment, and advocacy.
The final training explored how mentors can help mentees build empowerment rather than dependence.
Participants discussed how emotional regulation and boundaries influence advocacy, how previous experiences can affect confidence, and how pause, presence, and connection can become tools for self-advocacy.
The distinction is important.
Peer support is powerful precisely because it is not clinical care.
A strong peer supporter doesn’t have to fix someone’s situation.
They don’t have to carry another person’s emotional experience.
They can listen.
They can validate.
They can help someone identify what they need.
They can encourage connection.
And they can recognize when something is beyond their role and additional support may be needed.
Building those skills helps organizations create peer programs that are not only compassionate, but sustainable.
Supporting the People Whose Job Is to Support Patients
The same principle applies to professionals.
Give an Hour partnered with Xeris Pharmaceuticals this summer for a two-part mental health training with patient advocacy staff.
The first conversation focused inward: the mental health and wellbeing of the team itself.
The second looked outward: responding to the mental health needs of patients and caregivers.
Before the training, participants identified effective communication, recognizing distress, stress management, burnout, and sustainable self-care among areas of interest.
The conversations that followed were revealing.
Burnout resonated strongly.
So did rumination.
Boundaries generated significant discussion.
Participants began recognizing themselves in the material—not simply thinking about how they might apply it to someone else.
One person looked at a slide identifying 17 ways burnout can appear and raised his hand.
“I have 12 of those signs; time to pay attention to my mental health.”
Another participant realized that the cycle of harmful overthinking they experienced had a name: rumination.
Feedback described the training as “eye opening,” “empowering,” and a meaningful opportunity to think about work-life balance and preserving personal energy.
Something important was happening.
Participants weren’t experiencing the training solely as patient advocacy professionals.
They were experiencing it as people.
That’s exactly the point.
Patient-facing professionals can spend enormous amounts of emotional energy listening, solving, navigating, reassuring, and connecting.
Supporting patients well requires organizations to consider the wellbeing of the people doing that work.
Mental health capacity-building has to extend throughout the ecosystem.
Rare Advocacy Leaders Need Their Own Space, Too
Patient advocacy organizations often serve as the connective tissue of rare disease communities.
Their leaders may be building programs, raising money, responding to families, managing boards, tracking research, organizing conferences, supporting newly diagnosed patients, and advocating for systemic change, sometimes simultaneously.
Give an Hour’s Rare Leadership Peer Support community was created to give those leaders a place to show up differently.
In July, 15 leaders representing 14 unique patient advocacy organizations joined the conversation.
Instead of arriving with presentations or formal agendas, leaders could talk candidly about the realities of the work.
They discussed capacity.
Staff vacancies.
Board and research council relationships.
Community engagement.
The difficulty of determining whether programs justify limited organizational resources.
And they helped one another problem-solve.
The group serves several purposes at once.
It provides a free resource for patient advocacy leaders. It builds relationships across disease communities that might otherwise remain siloed. And it gives leaders firsthand experience with what well-facilitated peer support can feel like.
Perhaps most importantly, it reminds people whose roles often require them to be the support system that they deserve a support system, too.
When Partners Tell the Story
In August, Give an Hour was invited to Amgen’s Advocacy Week at its headquarters in Thousand Oaks, California.
The gathering brought together leadership and partners working across multiple health areas, including rare disease.
Give an Hour had an opportunity to share our work.
But rather than tell the entire story ourselves, we invited rare disease partners to help tell it.
Representatives from Patient Health Alliance, Myasthenia Gravis Association, IgG4ward!, Vasculitis Foundation, and Mission shared examples of how mental health programming had shown up within their communities.
They talked about Rare Leadership Peer Support.
Keynote presentations.
Clinical care.
Continuing education.
Conference collaboration.
Webinars.
Community support.
This was more than validation of individual programs.
It demonstrated something larger.
The strongest rare mental health work isn’t created when an outside organization decides what a community needs and delivers it to them.
It develops through relationships.
Listen.
Learn.
Build together.
Evaluate.
Adapt.
Then listen again.
Moving From Programs to Infrastructure
Taken individually, each experience from this summer tells a compelling story.
Taken together, they point toward something bigger.
Rare disease mental health cannot depend solely on whether someone happens to find a therapist who understands their experience.
Clinical care is essential, but the ecosystem around that care matters, too.
Peer supporters can be better equipped.
Advocacy leaders can have spaces of their own.
Conferences can intentionally create connection.
Caregivers can learn how to recognize emotional struggle.
Industry teams can better understand the people they serve while also protecting their own wellbeing.
Researchers can investigate psychosocial experiences alongside clinical outcomes.
Patient advocacy organizations can build mental health into their strategies instead of waiting until a crisis emerges.
Healthcare professionals can recognize the emotional weight their work may carry.
And patients and caregivers can be given something deceptively simple:
Permission to talk about the whole experience.
This is the direction Give an Hour continues to explore across the rare disease community.
Not one program.
Not one diagnosis.
Not one conference.
An ecosystem of support.
Listening Is Part of the Intervention
Perhaps the most important lesson from this summer is that we don’t need to enter every room already knowing the answer.
Rare communities are extraordinarily diverse.
A support model that works beautifully for one disease community may need to look completely different for another.
An emerging adult may need something different from a parent.
A caregiver may need something different after their loved one becomes more independent.
A sibling may experience rare disease differently depending on whether it has been present for their entire life.
A patient advocacy executive may need a space where they don’t have to be the executive.
A healthcare professional may need permission to acknowledge that uncertainty and loss affect them, too.
The work begins by listening closely enough to notice those differences.
Then we can build.
The Work Ahead
Give an Hour enters the next chapter of our rare disease work with more questions to explore, more partnerships to deepen, and more communities to learn from.
We are continuing to develop trauma-informed resources and peer support strategies.
We are exploring how mental health can be more intentionally incorporated into patient and family conferences.
We are strengthening the skills of community leaders and peer mentors.
We are helping industry partners consider mental health both within their teams and among the patients and caregivers they serve.
And we are continuing to listen for the experiences that haven’t yet received enough attention.
Because the emotional impact of rare disease isn’t confined to one moment in the journey.
It can appear during diagnosis.
During treatment.
During uncertainty.
During caregiving.
During advocacy.
During relapse.
During grief.
During independence.
And even during moments of hope.
This summer, hundreds of conversations across different communities reminded us why this work matters.
People don’t leave their mental health at the door when they enter a doctor’s office, attend a patient conference, join an advocacy organization, begin a clinical trial, care for a loved one, or go to work supporting patients.
Mental health travels with us.
Our systems of support should, too.
Mental health belongs in every rare disease conversation.
Give an Hour works alongside rare disease patients, caregivers, advocacy organizations, healthcare professionals, researchers, and industry partners to strengthen mental health support through clinical care, peer support, trauma-informed education, practical tools, and community-centered collaboration.
Visit GiveAnHour.org for more information & sign up for our newsletter at GiveAnHour.org/Newsletter. To sign up for Peer Support Groups, visit GiveAnHour.Org/ContactUs.
Stay in touch with Give an Hour:
Facebook | Instagram | LinkedIn
