Welcome to Issue 34

It is our wish that this newsletter finds you in good spirits in spite of the adversity that this global crisis has visited upon the world and our community. These extraordinary times have led to unexpected challenges and unwelcomed disruptions in each of our lives, but hopefully it's also delivered a greater appreciation for our loved ones and for those who enrich our day-to-day lives.


We greatly hope that you have been spared the most serious effects of this outbreak and that you have been able to access important and resources through your medical health care professionals and community. For those seeking more information, you may find a visit to rare disease organisation websites helpful.


For example, the National Organization for Rare Disorders (NORD) posts this guidance. This piece is dated March 5, 2020 and as we know new advice on Covid-19 is rapidly changing, such as on the recommended use of face coverings. However, the article helpfully includes update links to the CDC, FDA, NIH and WHO.


EURORDIS – Rare Diseases Europe, has also posted information. Remember also, that if you are feeling the effects of isolation particularly acutely at this time, you can begin or join in on discussions with the NA community through RareConnect.org by clicking the Our Patients tab on our website (www.naadvocacy.org).


Here at the Advocacy, we are grappling with the postponement of several eagerly awaited events. Specifically, the 10th International Meeting on Neuroacanthocytosis in Barcelona, Spain, where we expected to enjoy the company of several patients, family members and caretakers while learning about new developments in NA scientific research, as well as the Parallel Windsor and ASICS 10K London events, both of which promised a full day of challenges and fun. The latter two events also would have raised needed funds to assist the Advocacy in its mission. Fortunately, many people are hard at work with plans to reschedule these events for 2021 as we continue to work in support of our important cause.


Finally, we send our best wishes to all our wonderful patients, families and caretakers. We wish you much courage and strength as we navigate through these difficult times to a hopefully more healthy and enlightened tomorrow. Stay safe!

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