Database of Rare Disease Experts
As part of the Rare Disease Day observance, NORD has launched a project to create a database of physicians with expertise on various rare diseases. To nominate a physician (either a clinician or researcher or both), provide basic information on this online form. NORD will contact the physician to determine whether he/she is interested in being included in the database and to gather additional information.
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Research Survey for Individuals with Rare Disorders
Medical students at Michigan State University, College of Human Medicine are conducting a research project designed to measure barriers and improvements to diagnosis and treatment in people with rare disorders
http://www.surveymonkey.com/s/LGBDNNT
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| What can you do to promote Rare Disease Day? |
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Here's what I have planned.
First, I wrote a letter to the governor of my state to request a declaration of Rare Disease Day on February 28, 2010.
Next, I am making blue ribbons and blue crocheted flowers to hand to everyone I see from now until February 28th. Attached to the ribbon or flower is the following explanation:
This blue ribbon or flower has been given to you to raise awareness for Mastocytosis, on February 28, 2010, Rare Disease Day. Mast cells are something that are produced naturally in every body, necessary to assist the body in fighting possible foreign threats to the system. Individuals with mastocytosis have an abundance of mast cells and the mast cells do not work properly in reaction to a trigger, sometimes unknown. Mastocytosis is not contagious, even though some suffer skin legions and hives. Many patients are in danger of suffering anaphylactic episodes and carry EpiPens. For more information, check out www.tmsforacure.org.
[PDF] [DOC]
What can you do?
-- Erin Cunia, Webmaster, Board of Directors, Technology Chair |
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Online Mastocytosis Support Groups |
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| Mastocytosis-Medical Info [link] mastoMed |
| Created February 26, 2010, in honor of Rare Disease Day, this online support group was created for communication specific to medical issues concerning mastocytosis and mast cell related diseases. It is open to all patients and caregivers. You must be a "member" of this group to read and post messages. More general communications should be addressed to the mastoCom list (below). Request membership using the link above. |
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| Mastocytosis-General Info [link] mastoCom |
| Created February 26, 2010, in honor of Rare Disease Day, this online support group was created for general communication for patients and caregivers of mastocytosis and mast cell related diseases. You must be a "member" of this group to read and post messages. Request membership using the link above. |
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| Mastocytosis-Pediatric Info [link] mastoChild |
| Created February 26, 2010, in honor of Rare Disease Day, this online support group was created for communicaiton specific to pediatric mastocytosis and mast cell related diseases. It is open to all patients and caregivers. You must be a "member" of this group to read and post messages. Request membership using the link above. |
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| The Mastocytosis Society Honors Rare Disease Day |
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| Rare Disease Day Press Kit (see below) Follow us on Twitter http://twitter.com/tmsforacure |
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The world is coming together as many organizations join forces to jointly recognize the second Rare Disease Day on February 28. The Mastocytosis Society has partnered with these organizations to further the goals of this momentous day. Here are the goals of this initiative, taken from the Rare Disease Day website: |
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More specifically, this year we are seeking to achieve the following objectives:
- Promote research interest in the field of rare diseases
- Promote collaboration between patients and researchers
- To shape public policy and the research agenda
- To empower patients as actors in research
- To define research needs and priorities for rare diseases
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| This year, The Mastocytosis Society would like each person with a mast cell disorder to take the time to take action to bring awareness for Rare Disease Day. Here are some suggestions to get you started: |
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| 1. The National Organization of Rare Disorders suggests that you write to the governor of your state, and ask him to issue a proclamation recognizing Rare Disease Day. We took this a step further, and composed a letter that includes mention of Mastocytosis and Mast cell activation Disorders as rare diseases that need to be recognized, so that we can educate our health care professionals about these disorders, support patients and families, and promote research into finding treatments and a cure. Email the TMS Board when a proclamation is issued for your state! If you send me an email to chairman@tmsforacure.com, I will send you a letter already written, suitable for a governor in Microsoft word, specific to TMS and mastocytosis. All you have to do is change any word in red so that it is appropriate for your state, i.e. change the name and address of your governor, and put the name of your state whenever you see a red “Massachusetts”. At the end of the letter, after my name, add your own name and address. The more letters to each state governor the better!!! |
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Here is a link to all of the state governor’s offices: http://www.usa.gov/Contact/Governors.shtml Let’s get all 50 states to issue a proclamation!
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Need help? Contact me, at chairman@tmsforacure.org, Erin, our technology chair at websitetech@tmsforacure.org, Lisa at fundraising@tmsforacure.org, or Jody at mediarelations@tmsforacure.org.
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| 2. Take a copy of the TMS video "Mast Cell Activation Symptomatology" to one of your doctors who have not yet seen it. If you do not have a copy, email jbar51@verizon.net and ask Rita to send one to you, shipping expenses free of charge for Rare Disease Day! |
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| 3. Ask all of your friends and relatives to remember Rare Disease Day by making a donation to The Mastocytosis Society, either by going to our website, www.tmsforacure.org, and clicking on the Donate button, or mailing a check to The Mastocytosis Society, PO Box 731, Brenham, TX 77834. The check should have the notation Rare Disease Day, and funds will be used for research, education, and catastrophic emergencies for patients. |
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| 4. Contact your TMS local support group leader, ask for a meeting, and ask how you can fundraise to support all of the terrific initiatives that TMS is embarking on, including new research grants being handed out, translation of our video into French and Spanish, a survey to give input to the physicians working on the diagnostic criteria for mastocytosis and mast cell activation syndrome, a survey on coping with the stress of mast cell disease, a terrific annual conference with not one, but three different types of panel discussions planned, and working with other mast cell disease groups on joint ventures!!! You will be the person who benefits from these efforts! |
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| 5. Look at the TMS website, www.tmsforacure.org. Check out the store, and see if you can pick up a sale item to support TMS. Look at our different activities, and see where you might volunteer! Get a friend or neighbor to help you, as you teach one more person about mast cell disorders! |
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| 6. Think about how you might volunteer your services for TMS. Right now we have a very small board doing a huge amount of work. Call us and offer your services! We can use help as we work together for a cure! |
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| 7. Tell your family and friends about this important day. |
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| Go to the NORD website, www.rarediseases.org, and read all about the many activities planned for rare disease day. Watch the video and learn about other rare diseases. Educate yourself about how a rare disease becomes politically and socioeconomically relevant. |
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| Each year, it will be up to us, the patients and caregivers, to make Rare Disease Day the most positive of experiences! Together with hope, we work for a cure! |
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Valerie M. Slee, Chair
Board of Directors
Liaison, Medical Advisory Board
The Mastocytosis Society
23 Camelot Dr.
Shrewsbury, MA 01545
Phone: 508-842-3080
Fax: 508-842-2051
vslee@tmsforacure.org
www.tmsforacure.org |
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| The Mastocytosis Society Honors Rare Disease Day [DOC] [PDF] |
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| Sample letter to Govenor Deval Patrick of Massachusetts [DOC] [PDF] |
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| Mastocytosis RDD Press Kit News Release 2010 [DOC] |
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| Rare Disease Day Press Kit |
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| RDD Press Kit Letter to Editor 2010 [DOC] |
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| RDD Press Kit News Release 2010 [DOC] |
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| RDD Press Kit Orphan Drug Act 2010 [DOC] |
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| RDD Press Kit Q & A 2010 [DOC] |
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