Lived Experience Advisory Group (LEAG) Expression of Interest Form

The Foundation seeks to establish an advisory group that reflects the diversity of the Canadian PKD community. Selection will be based on achieving balanced representation across lived experiences, geography, age, and other characteristics that contribute to a broad range of perspectives.

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1. Contact information (Required.)

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2. City/Town

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3. Province or Territory

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4. Email (Required.)

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5. Phone

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6. Which language(s) are you comfortable participating in? (click all that apply)

English

French

Other (please specify)

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7. Age group

18-24

25-34

35-44

45-54

55-64

65+

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8. How would you describe the community in which you live?

Remote

Rural

Suburban

Urban/City-based

About You or the Person You Support
The following questions help us understand the range of lived experiences represented within the LEAG. If you are a caregiver or family member, please answer based on the person you support where applicable.

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9. Diagnosis (click all that apply)

Living with ADPKD

Living with ARPKD

Living with PLD (polycystic liver disease)

At risk for PKD (family history)

Other (please specify)

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10. Family Experience (click all that apply)

Parent of a child with PKD

Child of a parent with PKD

Partner or spouse of someone with PKD

Other family member or caregiver

Bereaved family member

Other (please specify)

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11. Treatment Experience. (click all that apply)

Not symptomatic and not receiving treatment

Experiencing symptoms and not receiving treatment

Experiencing symptoms and taking Tolvaptan

Experiencing symptoms and managing through lifestyle modifications (diet, exercise etc.)

Not symptomatic and managing through lifestyle modifications (diet, exercise etc.)

Participating/Or have participated in a clinical trial

Receiving/Or have received hemodialysis

Receiving/Or have received peritoneal dialysis

Kidney transplant recipient

Waiting for a kidney transplant

Living kidney donor

Other (please specify)

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12. Which areas of the Foundation's work are you most interested in contributing to? (Select up to 5)

Patient education and resources including webinars, forum and the annual Summit

Individual peer support and patient connection

Mental health and wellbeing including Mind Matters virtual peer support groups

Lifestyle management including nutrition, diet and exercise

Research priorities

Clinical trials and participation

Advocacy and public policy

Government relations

Awareness campaigns

Fundraising and community events

Healthcare navigation including access to care and treatment

Youth and Young Adults

Family and family-planning

Caregiver support

Volunteer engagement

Equity, Diversity and Inclusion

Other (please specify)

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13. Please tell us why these areas are important to you (Required.)

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14. What perspective or experience do you hope to bring to the Lived Experience Advisory Group? (Required.)

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15. Is there anything else you would like us to know about your lived experience or interest in joining the Lived Experience Advisory Group?

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16. Equity-Deserving Communities (Optional)

The PKD Foundation of Canada is committed to ensuring diverse lived experiences are represented. If you wish, you may self-identify with any of the following communities. (click all that apply)

Indigenous (First Nations, Inuit, Metis)

Black

Racialized person

Newcomer to Canada (within 10 years)

Person with a disability

2SLGBTQIA+

Prefer to self describe:

Lived Experience Advisory Group (LEAG) Expression of Interest Form

Question Title

* 1. Contact information (Required.)

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* 2. City/Town

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* 3. Province or Territory

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* 4. Email (Required.)

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* 5. Phone

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* 6. Which language(s) are you comfortable participating in? (click all that apply)

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* 7. Age group

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* 8. How would you describe the community in which you live?

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* 9. Diagnosis (click all that apply)

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* 10. Family Experience (click all that apply)

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* 11. Treatment Experience. (click all that apply)

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* 12. Which areas of the Foundation's work are you most interested in contributing to? (Select up to 5)

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* 13. Please tell us why these areas are important to you (Required.)

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* 14. What perspective or experience do you hope to bring to the Lived Experience Advisory Group? (Required.)

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* 15. Is there anything else you would like us to know about your lived experience or interest in joining the Lived Experience Advisory Group?

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* 16. Equity-Deserving Communities (Optional)The PKD Foundation of Canada is committed to ensuring diverse lived experiences are represented. If you wish, you may self-identify with any of the following communities. (click all that apply)

1. Contact information (Required.)

2. City/Town

3. Province or Territory

4. Email (Required.)

5. Phone

6. Which language(s) are you comfortable participating in? (click all that apply)

7. Age group

8. How would you describe the community in which you live?

9. Diagnosis (click all that apply)

10. Family Experience (click all that apply)

11. Treatment Experience. (click all that apply)

12. Which areas of the Foundation's work are you most interested in contributing to? (Select up to 5)

13. Please tell us why these areas are important to you (Required.)

14. What perspective or experience do you hope to bring to the Lived Experience Advisory Group? (Required.)

15. Is there anything else you would like us to know about your lived experience or interest in joining the Lived Experience Advisory Group?

16. Equity-Deserving Communities (Optional)

The PKD Foundation of Canada is committed to ensuring diverse lived experiences are represented. If you wish, you may self-identify with any of the following communities. (click all that apply)