It’s a cool day in Ottawa today but we have received warm news for our group! We heard today that we have been approved as a Not For Profit Corporation in Ontario. What this means for us is that now we can move forward with funding proposals that will help fund our budget and allow us to develop and implement awareness and patient support activities.
Our board members can now start work on these things but we want to hear from our members as well. Do you know of funding sources that may help us? Do you have ideas for patient support activities? This is YOUR group and your thoughts and ideas are vital, so feel free to share. Simply post your ideas in the comments, in the Facebook group or send us an email at acromegalyottawa@gmail.com.
I’ve also spoken with Matthew Luloff, my local representative at Ottawa City Hall, who has agreed to put our links on his social media pages. One more score for Acromegaly Awareness! He has also graciously agreed to attend the Light of Day Exhibit at Shenkman Art Centre in March 2020. We will keep on working to get the word out there, we have a voice and we are going to use it!
We are very happy to share with you that Acromegaly Ottawa Awareness & Support Network held their first Meet & Greet on Friday January 4, 2019. Thank you, Dianne, for hosting this little soirée, and for the abundance of delicious treats!
We were finally together in person, but we didn’t forget our online friends who couldn’t be there. We went live on Facebook to stream the more formal, informational segment of the meeting. You can check that out in the videos section of the group.
The group was eager to get together and excited to share personal stories and engage in a lively discussion. New friendships were made and some great ideas were exchanged. The group is always happy to welcome new members. Both patients and their caregivers are welcome and membership is FREE. Reach us at acromegalyottawa@gmail.com or join the Facebook group.
We are currently seeking patient stories for a blog series we’ll be creating. If you’re interested in sharing the story of your journey with acromegaly, please send us an email. We will then send you some questions for you to answer, in a sort of digital interview format.
Plans are already in progress for our next get-together which will probably take place in the spring. We will keep everyone updated when a time and place is determined.
In the meantime, please subscribe to our mailing list to make sure you get all the news, delivered right to your inbox!
I wanted to share with you my recent and first experience working with CORD (Canadian Organization of Rare Disorders) at their conference last week in Toronto. While feeling totally intimidated with acronyms flying around the room, I managed to gain some understanding of their role in helping those of us with rare diseases.
The 2 day, jam-packed conference gave me some insight into things that are happening in the health care arena in Canada and I wanted to pass along some of what I learned. The panel discussions shed light on what is happening and what is about to happen in the future and participants were able to have a voice and provide input so that the things we felt should be included in any report to the government on this issue would be rolled up in their report.
Canadian Acromegaly Ambassadors Deanna Badiuk (left) and Dianne Sauvé (right) spread awareness at the Canadian Organization for Rare Diseases conference in Toronto in November 2018
We do have a voice.
Here is what I learned:
Canada is preparing to implement transformations to its “not so national” pharmacare programs. Officials are grappling with the challenges presented by innovative therapies that are transforming healthcare and patient lives. CORD is one of many groups planning to present recommendations to the government on behalf of rare Diseases (including Acromegaly).
Members of CORD, which include patient groups, pharmaceuticals and patients themselves participated in this conference to help formulate feedback and strategies as well as ideas to be encapsulated by CORD and presented to the Federal Government for consideration before implementation of any pharmacare plan is rolled out. Rare diseases do not want to be left behind or forgotten in this new program delivery.
The current healthcare platform is based on last century drugs during a time when there was only a handful of biologics and even fewer drugs for rare diseases. The system was formulated when the human genome was still an idea and embryonic stem cell research was outlawed in the US. A new system has to take into consideration 21st century therapies, equitable access to those therapies and be delivered in a transparent, accountable and timely manner.
Panels, consisting of experts in various fields of healthcare, intellectuals, patients and advocacy group representatives for rare diseases presented their views of how things have been done in the past regarding the process of integration of new drugs, patient access, and delivery of new therapies and drugs throughout Canada. They provided insight and opinion on what the new system should include so that timely access of new drugs and therapies be assured for all patients.
Working in groups, conference participants took the information provided and worked through case studies to formulate plans and processes, that under a new platform, must be included, so that patient access to new therapies and drugs is assured.
It was a very informative conference that left me thinking of how things could change in the future for those of us with rare diseases. I’m happy to have had the chance to participate in these types of discussions and be a voice for those of us with an Acromegaly diagnosis.
Dianne Sauvé
Founder of Acromegaly Ottawa Awareness Support Network
Acromegaly Ottawa 