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Members: 120          Countries: 15

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 AARR Bulletin Board

For those wishing to donate, we have set-up a direct deposit Electronic Money Transfer (EMT) email: Funds will be directly deposited into AARR bank account. 
Up-to-date information on AARR Annual General Meeting can be found here.
AARR Annual General Meeting (AGM) for members is scheduled for 15 March, 2023 @ 0900 EST. View AARR AGM Invitation here.
Read AARR 2022 Year End Dispatch here.  
Head's-up.  AARR first annual AGM is planned for Wednesday, 15 March 2023.  Details to follow.
Huge shoutout to Lundbeck Canada for their kind donation to AARR operating fund.  Thank you!

Community Clubhouse

Neighbourly Outreach

We offer you a hand in a friendly, neighbourly way and smile.  Wishing you every success. 


Canadian Organization for Rare Disorders

CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.


Cancer Support Community

As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. Our Belief That Community Is Stronger Than Cancer.



The key aim of the organisation is to coordinate, in collaboration with its members, activities that are for the benefit of everyone affected by EPIDERMOLYSIS BULLOSA (EB) globally: the international patient community, patient support and advocacy groups, healthcare professionals, researchers, and industry.


European Patients' Forum

We are the leading voice of patient organisations in Europe. We lead patient advocacy in Europe providing a cross-disease perspective from a wide patient community to the policy-making process on issues which have a direct impact on patients’ lives. We act as an intermediary between the patient community and EU policymakers, by providing a crucial cross-disease perspective based on issues that have a direct impact on patients’ lives in a national and regional context. 


International Alliance of Patients' Organizations

We form clear positions on relevant healthcare policies and processes. We then advocate for change with a strong patients’ voice at international, regional and national level. We provide resources and training to our members, based on consultation with them about their needs, to help them thrive in their own fields. We support our members to work with others to further the agenda of patient-centred healthcare. This includes organizing events, such as regular regional meetings, and our biennial Global Patients’ Congress, where organizations can share best practice, gain insights, and speak out on behalf of patients. 


Nevus Outreach

Nevus Outreach is dedicated to bringing awareness, providing support, and finding cures for people affected by congenital melanocytic nevi and related disorders.


NORD - National Organization for Rare Disorders

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. 



We are dedicated to sharing educational information and resources for people living with paroxysmal supraventricular tachycardia (PSVT) and their friends and family.


Patients Canada

Formed in 2011, Patients Canada is a national, independent organization that champions change that matters to patients. As the culture within health care continues to evolve, there is increasing demand for patients to partner in guiding improvement in many areas of health care and across care settings. Patients Canada has pioneered the practice of bringing the patient voice to health care decision-making, ensuring decisions reflect patient priorities.


Rare Diseases Europe

EURORDIS seeks to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and medicines development, facilitating networking amongst patient groups, raising awareness, and many other actions designed to reduce the impact of rare diseases on the lives of patients and family.


Sick Not Weak

I have a mental illness. I am not ashamed. I am not embarrassed. I am NOT weak. SickNotWeak lives to bring comfort to the lonely, hope to the hopeless, and strength to those who believe they are weak. SickNotWeak understands that comfort, hope, and strength seldom come as a result of the number of people around us, but rather, the number of people who understand us.


Women and Gender Equality Canada

Women and Gender Equality Canada works to advance equality with respect to sex, sexual orientation, and gender identity or expression through the inclusion of people of all genders, including women, in Canada’s economic, social, and political life.