Finding Your Way Forward (Part 2)
A compassionate guide for navigating life with NMOSD or MOGAD
Finding Peer and Community Support
Connection is a powerful part of navigating a rare disease. Many people share that meeting others who truly understand helps them feel less alone and find a sense of belonging. We invite you to explore our advocacy programs to connect and feel supported.
PHA Advocacy, Education, and Support Programs
The following programs offer meaningful ways to connect with the NMOSD community through in-person and virtual events, one-on-one Helpline support, stories shared in our video series and podcast, and opportunities to get involved as a volunteer.
Coming Soon
- PHA Patient Advocacy Council
- The Rare Alliance Podcast
- Adapt-Ability
- Hear My Voice Storytelling Series
Your Mental Health and Self-Care Toolkit
Living with NMOSD impacts every aspect of well-being. Individuals living with rare diseases and their loved ones benefit from prioritizing care that addresses emotional and overall wellness. You deserve care, compassion, and support.
Caregiver Self-Care
Caring for someone with a rare disease can be deeply meaningful, but it can also be physically and emotionally demanding. Taking time to rest, ask for help, and care for your own well-being is not selfish, it is essential. At PHA we recognize the need for caregiver support and offer programs throughout the year to support families to avoid burnout, find new ways to communicate, and create space for themselves.
Your Perspective Matters Share Your Story
Share your story. Your lived experience has value. PHA’s Hear My Voice program offers a safe space to share your story in your own words.
Sharing your story can:
- Help others feel less alone
- Educate family, friends, even clinicians
- Build community
- Inspire hope
- Create change
Add your voice and share your experience:
Get Involved
Share your story. Your lived experience has value. PHA’s Hear My Voice program offers a safe space to share your story in your own words.
- Consider learning more about joining clinical trials: (link to clinicaltrials.gov)
- Join a Support Group to get to know others in the community
- Attend a Patient Day event in-person or virtually
Some people feel called to help others or raise awareness. If that’s you, the PHA Patient Advocacy Council (PAC) offers opportunities to volunteer.
Volunteers can:
- Advocate for the NMOSD and rare community
- Support Outreach
- Build leadership skills
- Partner with rare disease organizations
- Connect with other advocates
- Warmly welcome those who are new to NMOSD
*No fundraising requirement for volunteers
To learn more about how you can make a difference, apply for the PAC:
You Are Not Alone
Finding Your Way Forward is here to support you with information, connection, and compassion. While PHA does not provide medical advice, we are committed to walking beside patients, caregivers, and families, offering resources, education, community, and hope.