Resources we have run across and reference often, categorized as best we can. As we learn of more, we’ll keep adding.

Resources for Rare

Gillette Children’s Links directly to Gillette’s Resources Page, which has some, not all of the resources listed here. This page has helpful videos dealing with many of the issues we face as caregivers to kids with Rare disorders or conditions, disability and medical complexity.

Rare Disease Advisory Committee (RDAC) The Minnesota Rare Disease Advisory Council works with state agencies, research leaders, health care systems and patient advocacy groups to improve the journey for rare disease patients. We envision a world where every Minnesota citizen living with a rare disease has access to a timely diagnosis, comprehensive care, and an effective treatment.

Disability Hub This is an excellent resource that can help provide basic understanding of waivered services (financial assistance and support) for people with Rare Disease and disability. This is a direct link to the basics of Waivers.

National Organization of Rare Disorders NORD was founded after the passage of the Orphan Drug Act of 1983 (ODA) to formalize the coalition of patient advocacy groups that were instrumental in passing that landmark law. Since then, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported, and connected. We’re a full-service, mission-driven, and independent nonprofit reimagining a future where every person with a rare disease and their families live their best lives.

Unique Unique provides support, information and networking to families affected by rare chromosome and gene disorders.

Connection & Support

Hope kids Fun in-person events for families. If you have a child age 0-18 with cancer or a life-threatening medical condition – i.e., a progressive, degenerative, or malignant condition that may jeopardize the child’s life, you can apply for your child to become a HopeKid! They will ask for physician confirmation of condition.

Family Voices Family voices provides support for any family providing care for a child with special healthcare needs. This includes any disability both visible and invisible. This organization has national support and a large network of connections.

Wishes and More Wishes & More creates extraordinary experiences for wish children: The goal of this children’s charity is simple: to grant wishes to children with terminal and life-threatening illnesses and provide hopeful hearts, happy memories and assistance to those who love them.

Faith’s Lodge As the first dedicated retreat facility, Faith’s Lodge provides hope, connection, and support to parents and families coping with the death of a child.

Crescent Cove This is a Respite & Hospice Home for Kids is Minnesota's first and only home designed just for children and their unique needs. This is a FREE service that is provided by philanthropists as well as waiver funds. There is about a 6-month wait for respite care and you can get booted anytime if there is a need for hospice care. Both Haley and Tram’s kids have stayed there multiple times, they LOVE it!

PACER Through more than 30 projects, PACER provides individual assistance, workshops, publications, and other resources to help families make decisions about education and other services for their child or young adult with disabilities.

Highland Friendship Club You have to be 13+ to join. HFC is a nonprofit organization dedicated to ensuring that its members have ample chances to build personal relationships, explore new interests, and form lasting friendships with people of all abilities.

MDH: Family Support Organization Collaborative This has been a fantastic free and open-to-all monthly webinar series (must register) that is both bringing people of all backgrounds and experience together, but educating and collaborating for change. Join one, see what you think! Through our gatherings, we co-create strategies to better serve families with children and youth who have special health needs and disabilities. Our goal is to improve systems by leveraging the collective wisdom and resources of organizations across Minnesota.

Courage Kenny: Adaptive Recreation Courage Kenny Rehabilitation Institute Adaptive Sports and Recreation offers a wide variety of recreational and competitive sports programs for youth and adults in the Twin Cities metropolitan area. They partner with people of all ages and abilities to pursue their goals to live, work, learn and play by providing adaptive sports and recreation programs. These activities are adapted to enhance participants’ independence, improve self-confidence and encourage an active, healthy lifestyle. We also host a number of special events that provide unique opportunities to learn and experience adaptive sports and recreation. We offer individual and team sports for all skill levels and age groups.

MNnHands & Voices Minnesota Hands & Voices provides information, support, and referral to families at any point in their journey with their child who is deaf or hard of hearing, but especially for those families just starting on their path. If this is your first time visiting our website, start with these three categories for answers to general questions and an idea of what to expect.

Epilepsy Foundation No one should face epilepsy alone. Whether you’re newly diagnosed or have been living with epilepsy for years, we’re here to support you.

Multicultural Autism Action Network We are a non-profit organization dedicated to transforming and empowering multicultural communities by providing effective support and education for autistic children and their families. Our vision is to create a world where autistic individuals from multicultural communities have access to all necessary services to achieve their fullest potential.

Education

PACER This is a direct link to the webinars and workshops PACER center offers for education on anything from an IEP to Parent Leadership. We’ve consistently turned to PACER for education and support of all kinds.

Family-Led Academic Grand Rounds A collaborative initiative between the University of Wisconsin’s UCEDD, the Department of Pediatrics in the School of Medicine and Public Health, and the Bluebird Way Foundation has created 5 virtual Family-Led Academic Grand Rounds (FLAG Rounds) focused on Ableism in Pediatrics. These national, quarterly educational sessions will be led and presented by families. FLAG Rounds flips the traditional grand rounds model and embraces family as educators. Family Faculty will present an aspect of their “case” as a story and then offer strategies to develop knowledge, skills and abilities to perform, or partner in, the essential activities of care of children with disabilities and/or medical complexity.

Help Me Grow (birth - 3) Help Me Grow provides resources for families to understand developmental milestones and learn if there are concerns. This helps families take the lead in seeking additional support or referring their child for a comprehensive, confidential screening or evaluation at no cost.

Project ECHO Inspired by the way clinicians learn from medical rounds during residencies, the ECHO Model® has evolved into a learning framework that applies across disciplines for sustainable and profound change.

Minnesota Lend Program Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) Program is an interdisciplinary leadership training program spanning 16+ disciplines across the University of Minnesota.

Medical Help

Gillette For more than 125 years, they’ve focused on some of the toughest challenges in pediatric medicine. They care for brain, bone and movement conditions needing specialized expertise. When families arrive at our door, they feel they’ve come home. Gillette is a magical place for support of the rarest of the rare.

Gillette Quick Care Quick Care clinic is awesome! The clinic provides care for established Gillette patients that are experiencing minor illnesses on a same-day or next-day appointment basis. The Quick Care clinic does not offer walk-in appointments. Same-day or next-day appointments available. Call to schedule an appointment 651-229-3890.

Gillette Adult Care At the Phalen Clinic, Gillette offers adult visits with physicians and nurse practitioners in many specialties. Our facilities and technology are designed to support patients and their families. There are two clinics at this location, adult clinics are on the first floor, kids on the second.

Children’s Hospital With more than 60 pediatric specialties, ranging from anesthesiology to trauma care — Children's Minnesota has the largest and broadest team of pediatric experts in the region.

Shriners Hospital Our experienced care team brings hope and healing. We're driven to make lives richer, easier and less complex for children and families in the Upper Midwest and beyond.

M Health Fairview Masonic Children’s M Health Fairview Masonic Children’s Hospital traces its legacy back to 1911. Our current hospital facility opened in 2011 and was collaboratively designed with children and their families. The 254-bed hospital provides a beautiful, innovative space for the entire family that aims to address the physical, emotional, cultural, and spiritual needs of pediatric patients and their families as they heal. The hospital’s eco-friendly design focuses on efficiency, sustainability, state-of-the-art technology, safety, and family-centered care.

Therapy

Capernaum (in-home birth-3) Capernaum offers all kids of therapy, but one we found most helpful was in-home therapy when it was just too hard to leave the house. Their therapists understand the challenges of caring for a child with complex medical needs at home. We love finding the joys in supporting families and their children on that journey.

Gillette Children’s Rehab Therapy Some people who have physical disabilities, chronic pain or serious injuries need help to develop or regain strength, relief, mobility and independence. Rehabilitation services at Gillette Children’s help these people restore their movement and functional abilities and enhance their quality of life.

National Alliance on Mental Ilness What started as a small group of families gathered around a kitchen table in 1979 has blossomed into the nation's leading voice on mental health. Today, we are an alliance of more than 600 local affiliates who work in your community to raise awareness and provide support and education that was not previously available to those in need.

Advocacy

Partners in Policymaking Next 10-month cohort starts in September, 2025! Partners in Policymaking is a free program in Minnesota that teaches people with disabilities and their families how to advocate for positive policy changes. The program helps participants develop leadership skills and build networks.

Minnesota Rare Disease Advisory Council The Minnesota Rare Disease Advisory Council works with state agencies, research leaders, health care systems and patient advocacy groups to improve the journey for rare disease patients. We envision a world where every Minnesota citizen living with a rare disease has access to a timely diagnosis, comprehensive care, and an effective treatment.

Minnesota Consortium of Citizens with Disability We support people with disabilities by changing public policy and teaching self-advocacy skills. We invite you to explore our website and learn more about what we do, our members, our policy priorities, advocacy programs, and how to get involved.

Changing Spaces Minnesota The Minnesota Chapter is led by advocates Tram N. and Sarah St Louis. They were inspired to start advocating for accessible restrooms with universal changing tables because of their own struggles to care for their children while away from home.

Minnesota Play For All Every day, the students at Glen Lake Elementary would see children playing on the playground. But it dawned on our 5th- and 6th- grade class that all students could not play. The wood chips were a barrier. Equipment was a barrier. So they wrote a grant, gained momentum, and quickly realized they didn’t want to just stop at a swing. The students asked, “Can’t we do the entire playground?” With the help of donors, staff, community members, and countless volunteers, our students transformed their dreams into a reality and are now advocating for inclusive playgrounds everywhere!

Danny’s Dose a 501C3 Nonprofit – Changing Emergency Medical Protocols for Chronic Illness & Rare Disease.

Systems Change

Got Transition Got Transition® is the national resource center on health care transition (HCT). Its aim is to improve transition from pediatric to adult health care through the use of evidence-driven strategies for Healthcare professionals, youth, young adults and their families.

Family Engagement In Research at Gillette Family Engagement in Research (FER) is a collaborative, best-practice approach that equally values contributions from lived experience partners, clinicians, and researchers in all phases of the research process. FER seeks to change the way medical research is designed by having Lived Experience Partners (LEPs) involved in every aspect of a research study from proposal to dissemination.

Institute for Patient and Family-Centered Care IPFCC advances the understanding and practice of patient- and family-centered care. In partnership with patients, families, and health care professionals, IPFCC seeks to integrate these concepts into all aspects of health care. IPFCC accomplishes its mission through education, consultation, and technical assistance; materials development and information dissemination; research; and strategic partnerships.

PACER Part of PACER Center’s commitment to children with disabilities includes ensuring that the state and federal laws protecting the rights of people with disabilities remain strong. PACER works in coalition with other disability organizations to support special education laws and other related legislation.

Waivers

PACER Direct Link to Waivers Made simple resource through their Health Information Center.

Pediatric to Adult Transition

Gillette Information Hub for Pediatric to Adult Transition Growing older happens to everyone. Infants become children who become adolescents and young adults. This is called transition. Successful transition from pediatric to adult care is a purposeful and on-going process of helping young adults and their caregivers (parents and guardians) identify and prepare for changes in care that go along with growing into adulthood.

Guardianship Questions This is a direct link to Disability Hub’s guardianship information which often goes hand-in-hand with transition. The decision on of guardianship requires discussion with your family, your support team and anyone else you choose to involve. The decision is based on what's important to you — and what's important for you. Your wants and goals are at the center of the decision.

Research

University of Minnesota Center for Orphan Drug Research Since its inception in 2005, the Center for Orphan Drug Research (CODR) has been improving the care of individuals suffering from rare diseases through research, increased education efforts, and by taking an active role in shaping public policy applicable to rare diseases and orphan drug development.

National Institute of Health People with disability are now considered a Health Disparity Group. People with disabilities often experience a wide and varying range of health conditions that lead to poorer health and shorter lifespan. In addition, discrimination, inequality, and exclusionary structural practices, programs, and policies create barriers to timely and comprehensive health care, which further results in poorer health outcomes. People with disabilities who also belong to one or more other populations with health disparities fare even worse. NIMHD recognizes the importance and need for research to better understand the complexities leading to disparate health outcomes and multilevel interventions.

Patient Centered Outcomes Research Institute A research funding institution that values Lived Experience. You can volunteer to be on an advisory Committee or serve on a Patient and Family Advisory Board.

Family Engagement in Research (FER) Training Program Since its inception in 2018, the FER Program has been bringing families and researchers together to learn from each other about how to meaningfully partner in research. This 10-week micro-credentialed online course is delivered by CanChild Centre for Childhood Disability Research in partnership with Kids Brain Health Network (KBHN) and McMaster Continuing Education.

Social Media

There are several Facebooks Groups that can be useful, you often need to apply to join. These often have active parents willing to give their opinion or offer a potential solution day or night, but beware of the spread of misinformation. Always seek a credible source. Some useful groups we’ve found are:

1. Special Needs: Buy, swap or sell Equipment Toys and support (if you don’t want to wait for a waiver)
2. Waiver, CDCS, CSG, PCA Community
3. Special Needs Parents of Minnesota

You can also find connection by searching your rare disease on Facebook. This is often the easiest way for people to connect initially. Search hashtags on Instagram to find folks who are posting about your specific condition, but again, try and be sure to find a credible source.

Resources we have run across and reference often, categorized as best we can. As we learn of more, we’ll keep adding.Resources for Rare