August 10, 2016

 Vigabatrim (Sabril) Drug Shortage 

  • There is a temporary shortage of vigabatrin
  • The manufacturer has estimated a resupply date of September 1, 2016
  • If you need to refill a prescription for vigabatrin during the next 4 weeks, please contact your pharmacist to check the status of the supply
  • If inventories are low, your pharmacist may provide a partial refill initially
  • If your pharmacist is not able to refill your medication, contact your healthcare provider to develop a treatment plan
  • Continue to take antiseizure medication as indicated by your healthcare provider

Do not skip doses 

Do not take less than the prescribed amount

Do not make any changes in your treatment without medical advice

  • People affected by this shortage can get information and updates from their local epilepsy agency by calling 1-866-EPILEPSY (1-866-374-5377) and can alert their closest epilepsy agency if they need help finding supply of vigabatrin for themselves of their child
  • Updates about this shortage are also available on


August 11, 2016

We are pleased to inform you that an application package is now available at the following address for eligible youth interested in participating in a one-day Forum taking place in November 2016. The Forum is part of

The Government of Canada’s consultation process on planned accessibility legislation and youth between the ages of 15-30 with a disability or with life experience, work experience or academic experience related to disability and accessibility are invited to apply.


Please note that the deadline for applications is September 15, 2016 and that applications will not be considered past that date.


Please circulate this news throughout your networks so that as many youth as possible have the opportunity to apply to participate in this event.

If you have any questions, please email the Office for Disability Issues at:  ACCESSIBLE-CANADA@HRSDC-RHDCC.GC.CA

Media Release - Drug Shortage June 2016

June 29, 2016

Sheryl Ubelacker, health writer for the Canadian Press, has written an article about the clobazam shortage. It's been picked up by the Star and CTV:

Canada-wide shortage of epilepsy drug reaches ‘crisis’ point

Read the story here

'Terrified': Shortage of anti-seizure drug a crisis for patients:
Read the story here

TVA Nouvelles (Piblié le 22 juin 2016)- des milliers de patients risquent de payer le prix d'une pénurie:>

( Dr. François Dudeau, Montreal Neurological Insititute, was interviewed for the TVA coverage):

Lisez L'histoire


Update: June 23, 2016

Canadian Epilepsy Alliance Drug Shortage Committee

Clobazam is in short supply, but this drug is still available at some pharmacies. If inventories have become low or depleted at your pharmacy, ask your pharmacist to recheck the status of both generic clobazam and Frisium (brand name) with their suppliers.

Distributors have started receiving shipments this week of generic clobazam (Apo-clobazam, Apotex Inc.). The new stock will be spread across the country. There may be restrictions on the amounts available to individual pharmacies until the supply situation stabilizes. A second replenishment of generic clobazam (Apo-clobazam, Apotex Inc.) is expected to arrive at pharmacies by early July. Sheryl Ubelacker, health writer for the Canadian Press, has written an article about the clobazam shortage. It's been picked up by the Star and CTV:

It is expected that there will also be periodic shipments of the brand name product (Frisium, Lundbeck LLC) over the coming weeks as well.

Health Canada will be working with pharmaceutical manufacturers and other stakeholders to monitor status over the summer.

I take clobazam, what should I do?

Continue to take clobazam as indicated by your health care professional.


  • do not skip doses
  • do not take less than the prescribed amount
  • do not make any changes in your treatment without medical advice  

Contact your pharmacist and ask them if they will be able to refill your perscription. If inventories are low, the pharmacist may provide a partial refill initially.

Develop a management plan with your pharmacist and your healthcare provider in case clobazam is not available. You can share the following clinical management suggestions with your healthcare team:

Clobazam Shortage/ Pénurie de clobazam

If your pharmacy is unable to refill your prescription- ask your pharmacist:

  • have they exhausted all avenues to try and find clobazam for you?
  • have they searched for generic clobazam and brand name clobazam (Frisium)?

If it is necessary to make changes to your treatment plan due to the shortage:

  • ask for a copy of the new treatment instructions in writing
  • go over the information with your pharmacist
  • ask your pharmacist to explain the information again if the instructions are not clear

Continue working with your pharmacist and your health care provider until the situation is resolved in order to manage your epilepsy disorder in the safest, most effective way possible.

If you have any questions please contact Epilepsy NL: 709-722-0502


What is being done to prevent this from happening again?

The Canadian Epilepsy Alliance/Alliance canadienne de l’épilepsie is committed to helping people with epilepsy maintain access to a safe, consistent and reliable supply of antiseizure medication. We will continue to advocate for (i) prevention of antiseizure drug shortages and (ii) improved management when shortages cannot be averted.

If you are concerned about this situation as well, please take a few minutes to write to your Member of Parliament and provincial representative (MHA) to share your concerns. Explain how a drug shortage affects you and your family. Find your Member of Parliament (MP) and Find your provincial representative. 


Extensive Library
Here at ENL we know how important it is to be informed. Members and organizations can borrow from our resource centre for personal learning or to help teach others and promote awareness of epilepsy issues.
Services and Programs
Epilepsy Newfoundland and Labrador offers its members and interested individuals a wide range of services and programs to meet your needs concerning all aspects of living with epilepsy.
Thrift Shop
Come visit our store Previously Loved Clothes and Things located at 351 Kenmount Road. Remember, because we are a charity, you never pay tax!


Epilepsy Newfoundland and Labrador is a registered charity founded in 1983. It is the only epilepsy organization serving the province and representing more than 10,000 men, women, children, and their families, who are living with epilepsy. The association is funded by donations; 100% of which remain in the province to help develop programs and services dedicated to the promotion of independence and quality of life for all people with epilepsy and their families.

About 300,000 Canadians (1 % of the population) are affected by epilepsy
In one year, an average of 14,000 people learn they have epilepsy.
Each year, 1 in 2000 people are diagnosed with epilepsy
The prevalence of epilepsy in persons over the age of 65 is approximately 7%: 1 in 14 seniors.
Each day in Canada, an average of 38 people learn they have epilepsy.
60% of new patients are young children or seniors.

Blog Post

Be sure to check in on our monthly blog entry

  • The media and persons with disabilities
    The media and persons with disabilities

    Epilepsy Newfoundland and Labrador was invited to a discussion about persons with disabilities and the media by the Coalition for Persons with disabilities (COD).

    COD is focused on creating a positive image…

  • Festivals more inclusive than Ever
    Festivals more inclusive than Ever


    The 40th Annual Folk Festival will be taking place at Bannerman Park August 4-7. The festival is featuring some great local headliners, including Amelia Curran, Sherman Downey and the Once, to…

  • Two Families, One Great Cause
    Two Families, One Great Cause

    When people come together, great things can happen.

    A very long time ago, the Edmunds of Bay Roberts got a call about our Door-to-Door canvassing campaign. Immediately, they decided to volunteer their…