Just Diagnosed with Rare Diseases / Undiagnosed in Saskatchewan
You're not behind. There's no timeline. Start wherever you're ready and go at your own pace. Everything on this page is free.
Right Now
You're not alone. Whatever you're feeling right now is normal.
Not having a clear diagnosis — or having a rare one — is its own kind of isolating. But you don't need a specific label to get help. Benefits and support are based on functional limitations, not just diagnosis names.
Who to call today
Canadian Organization for Rare Disorders: 1-877-302-7273
CORD helps families with rare and undiagnosed conditions navigate the system.
There's nothing you need to do medically right now that isn't already being handled by your care team.
A note about late-night Googling
We've all done it. At 2am you'll find yourself reading something terrifying written in 1997 that doesn't reflect where things are today. If you're spiraling, close the laptop and come back here tomorrow. The information on this page is current, Canadian, and reviewed. You're going to be okay.
When You're Ready — The Important Stuff
These programs have waitlists — some are months long. Applying now means you'll be closer to the front when you need them. None of this is urgent today. But when you have the energy, start here.
Disability Tax Credit (DTC)
Opens the door to $200/month in child benefits, $90,000 in RDSP grants, and several other tax credits.
How to apply:Ask your child's doctor to fill out form T2201. That's it.
Read the full DTC guideSaskatchewan provincial programs
Special Needs Equipment
Funding for mobility aids, hearing aids, and other assistive devices through the Saskatchewan Aids to Independent Living (SAIL) program.
Autism Individualized Funding
Up to $4,000/yearFunding for autism-specific therapies and interventions for children.
About waitlists
Apply for everything on this list even if you're not ready to use the services yet. You can always decline when your name comes up, but you can't get back the time you spent not on the list. Think of it as holding your place in line.
The Paperwork
Nobody tells you that a disability diagnosis comes with a mountain of paperwork. Here's what you need and where to keep it. Get a folder (physical or digital). Label it. Everything goes in there.
Documents to gather
- 1Collect all medical records, test results, and specialist reports in one binder
- 2Request a summary letter from your primary physician documenting all symptoms and functional limitations
- 3If undiagnosed, ask about a referral to a genetics clinic or rare disease program
- 4Document the impact on daily functioning even without a specific diagnosis — you can still qualify for benefits
- 5Keep a detailed symptom diary and track all medical appointments
Always have copies of
- Child's health card
- Social Insurance Number (SIN) — apply if you don't have one
- Birth certificate
- All therapy reports and progress notes
- School records and IEP documents
- Receipts for all medical expenses, therapy, equipment, travel
Track your expenses
Starting today, keep every receipt for anything related to your child's condition: therapy sessions, medications, equipment, mileage to appointments, parking at the hospital. These are claimable on your taxes.
View Tax CalendarBuilding Your Team
Raising a child with Rare Conditionsisn't something you do alone. Here are the people and organizations who can help.
National organizations
National advocacy organization for Canadians affected by rare diseases, representing over 1 in 12 Canadians with a rare disorder.
National organization funding research, advocating for improved care, and supporting Canadians with cystic fibrosis.
National organization providing support, education, and advocacy for people affected by Huntington's disease, with provincial chapters.
National organization supporting families affected by Rett Syndrome through 3 clinics, research, and a national registry.
Organizations in Saskatchewan
Nonprofit organization supporting individuals and families affected by rare conditions in Saskatoon, Saskatchewan. Provides advocacy, support groups, resources.
Registered Canadian charity providing disability-related services. CRA Registration: 130239536RR0001
Nonprofit organization supporting individuals and families affected by rare conditions in Saskatoon, Saskatchewan. Provides employment support, job training.
Nonprofit organization supporting individuals and families affected by rare conditions in Regina, Saskatchewan. Provides advocacy, support groups, resources.
Recommended therapies
Here are the therapies typically recommended for Rare Conditions:
- Genetic counselling
- Condition-specific specialist care
- Occupational therapy
Specialists to request
- Geneticist for undiagnosed conditions
- Rare disease specialist or academic medical center
- The relevant organ-system specialist based on primary symptoms
- Social worker for benefits navigation (rare disease families often face unique barriers)
- Psychologist for coping with diagnostic uncertainty
You are the expert on your child. The doctors are consultants. Don't be afraid to ask questions, disagree, or get a second opinion.
Looking Ahead
You don't need to think about any of this today. Bookmark this section and come back when you're ready — whether that's next month or next year.
RDSP (Registered Disability Savings Plan)
The government will give your child up to $90,000 over their lifetime — but only if you open this account. You need the DTC first. Once approved, open an RDSP even if you can't contribute. The government deposits bonds for low-income families automatically.
RDSP GuideHenson Trust
If your child will receive provincial disability support as an adult, a regular inheritance could disqualify them. A Henson Trust protects the inheritance without affecting benefits. You don't need to set this up now — but when you write your will, make sure your lawyer knows about Henson Trusts.
Education rights in Saskatchewan
Saskatchewan uses Personal Program Plans (PPPs) for students with intensive needs. School divisions must provide supports and adaptations. The province provides additional funding to school divisions for students with intensive needs.
Your Rights guideTurning 18
Children's services end at age 18 (19 in BC). Adult disability programs have separate applications and often long waitlists. This feels far away. It comes faster than you think. But you don't need to worry about it now — just know it's covered in our guide.
Turning 18 GuideTax planning
Most families of children with disabilities leave $10,000+ per year in unclaimed benefits.
You're Not Alone
Thousands of Canadian families navigate this path every year. Connecting with others who understand can make all the difference.
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This directory grows because people in the community help us find what we've missed. Let us know about organizations, programs, or services across Canada.