Central Arizona Rare Disease Support

Central Arizona Rare Disease Support Central Arizona Rare Disease Support We also encourage those that have information or other contribution to e-mail or contact us!

Our hope is to help increase awareness and availability of information to those diagnosed with rare diseases and disorders, and develop a network of support and resources to help those living under these special circumstances. While there are approximately 6,000 recognized rare disorders recognized by the National Institutes of Health, we hope to gradually build the information and resources we ha

ve available on this website to help everyone whose lives have been impacted by any of these disorders, including family members caregivers, friends, and anyone else who is interested, and particularly the resources and support that is available to people in Arizona. To this end, this website contains information on various health conditions and resources specifically geared for these disorders, as well as links, current research, and anything else that may be of some aid to someone.

Sanfilippo Syndrome - MPS 3  https://www.nlm.nih.gov/medlineplus/ency/article/001210.htm
05/17/2016

Sanfilippo Syndrome - MPS 3 https://www.nlm.nih.gov/medlineplus/ency/article/001210.htm

Sanfilippo syndrome To use the sharing features on this page, please enable JavaScript.Sanfilippo syndrome is metabolism disorder in which the body cannot properly break down long chains of sugar molecules. These chains of molecules are called glycosaminoglycans (formerly called mucopolysaccharides)...

Learn more about Valley Fever - in the meantime, take my words for it.  Stay inside.  Do not open your windows.  If you ...
05/17/2016

Learn more about Valley Fever - in the meantime, take my words for it. Stay inside. Do not open your windows. If you are in your car stay in your car - the haboob will pass within about 15 minutes. Do everything you can to not have to breathe this air. If you do and develop a cough or pain in your lungs, get in to an urgent care or your doctor's office for a Valley Fever test.

WOW! Wall of dust hits I10 near milepost 376 - freeway is currently closed.

As UofA Medical in Tucson becomes a part of the Banner Medical giant, they have already lost three of their top surgeons...
05/14/2016

As UofA Medical in Tucson becomes a part of the Banner Medical giant, they have already lost three of their top surgeons, and will most likely lose at least two more. Reading this article should help patients and caregivers understand that politics has no place in medical care. Megagiant Administration only lessens the likelihood of surviving a serious trauma. There seems little that patients with rare conditions can do to maintain a working relationship with knowledgeable physicians.

Top trauma surgeon and his team treated victims of the Jan. 8, 2011, mass shooting in Tucson.

05/10/2016

Researchers delivered a modified RNA that encodes a telomere-extending protein to cultured human cells. Cell proliferation capacity was dramatically increased, yielding large numbers of cells for study.

05/10/2016
So many of us have rare disease, or have loved ones with extremely rare conditions.  Make a check list, leave your emerg...
05/06/2016

So many of us have rare disease, or have loved ones with extremely rare conditions. Make a check list, leave your emergency box somewhere so that you can carry it with you.

Allergic Living is the leading magazine for those with food allergies, celiac disease, gluten sensitivity or environmental allergies. It features in-depth articles, news and safe recipes.

Be a hero.  The American Red Cross is low on platelet.  If you can, please donate!
05/04/2016

Be a hero. The American Red Cross is low on platelet. If you can, please donate!

Right now, platelets are being distributed to hospitals as quickly as they are donated. Platelets are often critical for cancer patients, those undergoing organ transplants and others with serious medical conditions. Schedule an appointment this week: Red Cross Blood Donor App (3cu.be/blood), rcblood.org/1Z4pSHu or 1-800-RED CROSS.

If you are from a state east of the Mississippi and have the symptoms of VF, but not the diagnosis, have your doctor tes...
04/27/2016

If you are from a state east of the Mississippi and have the symptoms of VF, but not the diagnosis, have your doctor test for Blastomycosis...

Blastomyces lives in the environment, particularly in moist soil and in decomposing organic matter such as wood and leaves. In the United States, the fungus mainly lives in the midwestern, south-central, and southeastern states, particularly in areas surrounding the Ohio and Mississippi River valley…

If you spend some time at Lake of the Woods, Ontario, Canada, use the same precautions you would use in the Desert South...
04/27/2016

If you spend some time at Lake of the Woods, Ontario, Canada, use the same precautions you would use in the Desert Southwest. Sometimes, there is just nothing you can do to avoid a mycosis.

A popular cottage area in northwestern Ontario has become a global hot spot for a rare disease caused by a fungus in the soil, which can be deadly if untreated.

Returning service members and Veterans are plagued by a large number of 'unexplained' illnesses which result from a larg...
04/24/2016

Returning service members and Veterans are plagued by a large number of 'unexplained' illnesses which result from a large number of environmental factors. Understanding this multiplicity of problems is the job of physicians and surgeons, yet so many lack the knowledge to provide substantive help.

To Whom It May Concern: Since 2001 the United States of America has been fighting relentlessly in the Global War on Terror. Our service members have been deployed into hostile, polluted environments

04/23/2016

Circle of willis

A relatively simple slide show with information about high blood pressure (hypertension).
04/22/2016

A relatively simple slide show with information about high blood pressure (hypertension).

See inside the arteries where high blood pressure can lurk without outward symptoms. WebMD explains the causes, tests, treatments, and remedies to stop this "silent killer."

Rare and beautiful.....Image from Precious World
04/21/2016

Rare and beautiful.....
Image from Precious World

You don't have to be good at something to be liked.
* Stephen Richards *

04/21/2016

A universal cure for asthma and food allergies is on the horizon after scientists found a way to convince the immune system to ignore triggers like pollen or peanuts. The new approach involves taking a small amount of the problem food or allergen and encasing it in a special shell to form a 'nanopar…

04/21/2016

Can you imagine fighting every day through extreme weakness and pain to care for your children, to go to work, or just to keep breathing? Valley Fever can do that to you.

Many who have severe immune issues take some of these drugs, such as Benadryl and Meclizine.
04/20/2016

Many who have severe immune issues take some of these drugs, such as Benadryl and Meclizine.

Using brain imaging techniques, researchers found reduced brain sizes and lower metabolism in older patients taking drugs that are commonly used to help people fall asleep or fight allergies.

Great sadness here for this young man's family...Our prayers for Javier.
04/15/2016

Great sadness here for this young man's family...Our prayers for Javier.

Allergic Living is the leading magazine for those with food allergies, celiac disease, gluten sensitivity or environmental allergies. It features in-depth articles, news and safe recipes.

Reclassification of certain encapsulated thyroid tumors are reclassified, removing the world 'cancer' from the descripti...
04/15/2016

Reclassification of certain encapsulated thyroid tumors are reclassified, removing the world 'cancer' from the description.

Medical experts reclassified as noncancerous a specific kind of thyroid tumor, sparing about 10,000 people a year from aggressive treatments.

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