Our foundation was founded by award winning inclusiveness and accessibility advocate Carion Fenn, recipient of The Ontario Volunteer Service Award, Spinal Cord Injury Ontario & University Health Networks Patty Dawson Award, Town of Ajax – Ajax Civic Award & Accessibility Award, and Abilities Awards - Advocacy Award. ​We provide support through our monthly Rare Disease Support Grou Meetings in partnership with Ajax Public Library. Educate and help find support through our Rare Disease Expo Supported by Town or Ajax, Mental Health Forum in partnership with Ajax Public Library, Flag Raisings and Proclamations. 


Our goal is to support communities by teaming up with organizations like the Ajax Public Library as our support group meetings partner. Having our first annual Rare Disease Expo support by The Town of Ajax, having the Carion Fenn Award sponsored by Pickering Rotary Club, and having Exhibitors like Diabetes Associations,Von Canada, Lam Canada, Epilepsy Durham, Town of Ajax Diversity and Accessibiity Committee, Pickering Rotary Club, NF Ontario, Community Care Access Centres, Health First Family Chiropractic, Miranda Naturopathic Clinic, Abilities Centre. Some Rare Diseases or Disorders you may not think are Rare: Alzheimer, Arthritis, Autism, Cancer, Cerebral palsy, Cervical Dystonia, Dementia, Diabetes, and more. See our Rare Disease page for more details.​

Partner & Sponsors: 

Next: May 11, 2017 6:30pm Estern (From Dust till Dawn

​Carion Fenn Foundation is a Registered Charity Established to Educate, Support and help find solutions for those affected Rare Diseases such as Syringomyelia (SM), Chiari Malformation (CM), EDS, Arthritis, Epilepsy, Sarcoidosis, LAM, Familial Ataxia and other Diseases or Disorders. There are over 7,000 known rare diseases or disorders and more than 50% of those affected are children. We strive to help those affected from suffering in silence without the help and support that they deserve. 

Rare Disease & Disorders are NOT as RARE as you think. Some Rare Diseases & Disorders affecting our communities. 

A list narrowed down to help simplify the understanding of what is a rare disease to allow the public to get a better understand of Rare Diseases & Disorders affecting our Communities. 

Alzheimer              Arthritis                    Autism  

Bronchiolitis          Burning mouth syndrome
Cancer                 Carpenter syndrome
Cerebral palsy       Cervical dystonia
CHILD syndrome   Chiari Malformation
Cholesterol            Crohn's disease 
Cystic fibrosis        Deafness                 Dementia
Diabetes                Dystonia
EDS (Ehlers Danlos Syndrome)              Epilepsy
Fibromyalgia          Fraser syndrome    

Gallbladder            Glaucoma                 Headache
Heart disease         Heart tumor              Hepatitis
Hydrocephalus        NF (Neurofibromatosis)
LAM (Lymphangioleiomyomatosis)          Leukemia
Lupus nephritis        Measles                 Meningitis
Mumps                    Paine syndrome     Paraplegia
Parkinson                 Polio                     Q fever
Rabies                      Rubella                 Sarcoidosis
SARS                       Scoliosis

Sickle cell anemia     Sjogren's Syndrome 
Smallpox                  Spina bifida
Spinal cord neoplasm Syringobulbia
Syringomyelia           Tuberculosis  

Whooping cough        Yellow fever

List Narrowed down from Global Genes Rare List & Names given by those we provide support to. 

October 10, 2017 

6:30PM - 9PM

​International Mental Health Day