Loeys-Dietz Syndrome Foundation Canada is a 1-star rated charity that is not financially transparent. The charity spent more on fundraising than its health programs in F2020. Before you give, read Charity Intelligence's report. 

Founded in 2011, Loeys-Dietz Syndrome Foundation Canada is (LDSF Canada) aims to support people affected by Loeys-Dietz Syndrome (a connective tissue disorder). Its activities are closely linked with its American counterpart: LDSF USA. The charity has three main programs: Education, Research, and Patient Support. It does not disclose how much it spent on each program in F2020.

On the Education front, the charity has collaborated with LDSF USA to participate in 17 events for medical professionals in Canada, the United States and Italy. Loeys-Dietz Syndrome Foundation reports that it created a medical presentation and the "Head-to-Toe" diagnostic check that it has presented to over 1,300 medical professionals. It also runs an annual Heritable Aortic Disorders Symposium. The annual conference brings together healthcare professionals working with patients living with Loeys-Dietz syndrome and other heritable aortic disorders. It has run three symposiums in 2018, 2019 and 2022 since inception.

Through its Support program, the charity helps clinics in Canada expand their reach and provides patient services and fundraising efforts for them. LDSF Canada reports that it assisted dozens of patients and their families in connecting them with appropriate medical and support services since its inception.

Through its Research program, the charity has launched a Global Research Inventory Program (GRIP). GRIP is a global inventory of research published on Loeys-Dietz syndrome. The database currently has over 1,300 articles.

Loeys-Dietz Syndrome Foundation Canada's audited financial statements report that it received $47k in donations in F2020. However, in its filing with the CRA, LDSF Canada states that it received $13.9m in tax-receipted donations. The charity also reports on its audited financial statements that it received $600k in revenue from donated life insurance policies in F2020.

Charity Intelligence took program, administrative, and fundraising costs from LDSF Canada's filing with the CRA. In F2020, administrative costs accounted for 12% of total revenues (less investment income), and fundraising costs represented 2,914% of donations and special events revenue. For every dollar donated to the charity, less than one cent goes to the charity's programs.

Charity Intelligence has displayed LDSF Canada's fundraising costs as 88% of donations in F2020 to display the overhead spending figure as a positive number. The charity reports that it spent $1.4m on fundraising to raise $647k in donations and special events revenue in F2020. LDSF Canada spent $11k (less than 1% of total expenses) on programs and grants. This is outside Ci's reasonable range for overhead spending.

Funding reserves are negative due to a $3.9m interest-bearing loan.

LDSF Canada has not reported any full-time or part-time employees in its annual filings with the Charities Directorate. The charity paid $147k in professional and consulting fees in F2021, which is not included in salary figures.

The charity reports that it used external fundraisers. In F2020, the charity paid $1.1m to receive $13.9m. In other words, it cost the charity 8 cents per dollar raised through these external fundraisers.

The charity is not financially transparent. Audited financial statements are available only through an official request from the CRA.

Charity Intelligence has sent this new charity profile to Loeys-Dietz Syndrome Foundation Canada for review. Changes and edits may be forthcoming. Additional information will be made available May 2023.

Updated August 17, 2022 by Ann Lei