For blogs related to the topics below be sure to check out the beneficial blogs page.
The Marfan Foundation: (Formerly the National Marfan Foundation) The MF has long been an invaluable asset to the MFS community and has been directly responsible for many positive and life changing events for people with Marfan Syndrome and their families. They are undoubtedly the best resource for information on Marfan Syndrome; they are extremely dedicated, helpful and informative. It literally covers every basic thing you’d want or need to know about the MFS and is an up-to-date resource for all of the latest in research and news. The Foundation is also a direct link to the Marfan community at large and provides many resources for those seeking to connect with others with connective tissue disorders.
Canadian Marfan Association: A great resource for anyone living in Canada who has a connective tissue disorder (Marfan Syndrome and otherwise). Their site also includes the locations of clinics specifically tailored to Connective Tissue Disorders as well as volunteer hotlines for when you have questions, and the names of doctors in the country who are experienced with these types of disorders. Their site features a wealth of information and I highly recommend checking it out if you live in Canada and have – or suspect you may have – Marfan Syndrome or a related disorder.
The Marfan Net: A great resource for people in Australia and New Zealand who have Marfan Syndrome, are in the process of being evaluated for it, or who have a family member with the diagnosis. This website offers many different resources, along with up-to-date information regarding Marfan Syndrome and invaluable peer support from those who truly understand what it’s like to have Marfan Syndrome. Click here to register and become a part of the Marfan Net community.
This link provides information on the different types of lens implants that may be used by those with lens subluxation (ectopia lentis).
The ILC Foundation: an amazing asset to young people in chronic pain and their families. They offer one on one counseling, as well as an extensive peer support network, and numerous other invaluable resources. The ILC Foundation has been tirelessly working to improve the lives of young people with chronic pain in Canada, who too often fall through the cracks of care. And, I’m ecstatic to say that they’re doing an amazing job in helping to initiate much needed changes Canada.
Chronic Pain Association of Canada: “The Chronic Pain Association of Canada is Canada’s largest independent, not-for-profit charitable organization serving people affected by pain, through education, information, support advocacy.”
Pain BC: “Pain BC works toward an inclusive society where all people living with pain are able to live, work, play, relate, and learn with confidence and hope, and without their experience of pain being a barrier to pursuing their lives.”
Life Is Now: Teaches “effective chronic pain self management” through various means such as retreats, education, pain care products and therapeutic services.
End The Hurts: Their mission as stated on their website: “we want to raise as much awareness as we can for people who suffer from Ehlers Danlos Syndrome. Please help us spread the word and help people who suffer on a daily basis from this and other invisible illnesses.”