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.............................................."An International Alliance of Support and Science"

Some ideas on how to teach others about
PMS during Rare Disease Week

By Ashley Shattles

Chair, Legislative / Advocacy Committee


Rare Disease Week is Feb. 29 through March 3, an exciting week where people who are living with or affected by a rare disease; patient organizations; health professionals and decision makers will raise awareness.


Since Rare Disease Day was first launched in Europe in 2008, thousands of events have taken place around the world reaching hundreds of thousands of people.


More than 6,000 rare diseases -- defined as those affecting fewer than one in 200,000 people and including Phelan-McDermid Syndrome -- have been identified so far, affecting the daily lives of millions of families. This year's theme, “Patient Voice -- Join Us in Making the Voice of Rare Disease Heard,” recognizes the impact patients and patient advocates have in using their voice to bring about change.


We encourage everyone to participate in Rare Disease Day. For an introduction to Rare Disease Week, sign-up for this webinar at 2 p.m. EST Jan. 20.


PMSF encourages our families to participate in the following ways (please stay tuned for more information about each activity in early-mid February):


Awareness:

-- Create a Facebook profile picture for Rare Disease Day on GlobalGenes.org

-- Write a letter to the editor and send it to your local newspaper about what Phelan-McDermid Syndrome and Rare Disease Day mean to you

-- Create a short video clip of your child or adult with PMS for Rare Disease Day/Week and share on social media

-- Participate in Rare Disease Day/Week on Social Media


Advocacy:

-- Share your story. We are asking families to write to their representatives to tell them why Phelan-McDermid Syndrome and Rare Diseases are important to you. Your story will be hand-delivered to your Member of Congress.

-- Our goal is to have 22 PMSF families or patient advocates who will meet with their State Representative or attend a Rare Disease Event on Capitol Hill.


There are many other ways families may want to participate in Rare Disease Day/Week.

-- Organize an awareness display at a local school or hospital

-- Host an event at a local community center or library

-- Participate in a lobby day at your State Capitol

-- Create artwork to commemorate the day and share on Social Media


If you participate in an event on Rare Disease Day, remember to share with PMSF. Also, use the #PMSF, #RareDiseaseDay or #RareDisease hashtags when posting to social media.




PMSF International Family, Research Conference


July 20-23, 2016, in Orlando, Fla.


Download our free PMSF conference phone app through the App Store or Google Play.


JUST ANNOUNCED: Room Rates




 

 

2016 PMS calendars are in stock,

ready for ringing in the new year


Get your 2016 PMSF calendar so you can see our awesome kids every day all year long. They’re $20 each plus shipping and handling. Click on the Shopping link at the left to order yours today.




Let your voice be heard


Phelan-McPosium at July conference will give parents

a say in future research into Phelan-McDermid Syndrome


There's something new coming to this July's international conference. It's called the Phelan-McPosium, a patient-centered outcome workshop that will address your concerns about your child with Phelan-McDermid Syndrome Foundation through education, polling and discussion.

 

It's also an opportunity to help influence the direction of future research studies.

 

Some of the topics to be discussed include genetics; cognition, learning and development; language, communication and social behavior; sleep; challenging behavior; regression; epilepsy and more.

 

Here's how it'll work:

-- The one-hour sessions over two days will be divided into three, 20-minute blocs.

-- The first will be a review of the session's topic, the second will be small-group discussions and the final 20 minutes will be for a panel of researchers to summarize the takeaway messages and discuss potential research studies to address the most pressing concerns of the patient community.

-- We'll capture your priorities by using the PollEverywhere app and moderators will take notes from the discussions.

-- Parents and caregivers will also have a chance to talk to researchers who are part of the sessions.

 

If you can't attend the conference you still can participate in the workshop. We'll live stream the sessions and you'll be able to submit questions and comments via social media. You'll also be able to use PollEverywhere to log your priorities.

 

There is no extra cost to attend the Phelan-McPosium, it's part of your conference fees to attend the "Embrace, Engage, Empower" International Support Group. You do not have to attend all seven sessions, but your input on as many topics as possible is important to directing research.

 

You'll be hearing more about the Phelan-McPosium as we get closer to the conference in July. If you have questions you can email Geraldine Bliss.

 

We hope to see you at the conference

and the Phelan-McPosium!


 

 

 

 

 
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Mark your calendar

 

Make a note of these significant upcoming events.

 

Jan. 24 Start of Phelan Lucky fund-raising campaign. Runs through Feb. 14

 

Feb. 6 Jackson's Trivia Night hosted by PMS parents the Goldsmiths


Feb. 7 Request a Rare Disease Day proclamation from your elected officials. Contact Kristen Angell at kangell@rarediseases.org

 

Feb. 10 Register for Rare Diesease Week on Capitol Hill. #RareDiseaseDay


Feb. 14 End of Phelan Lucky fund-raising campaign


Feb. 20 Take a few minutes to look over the valuable family support and medical information under the Resources link in the menu list on the left side of this page


Feb. 28 Surprise Phelan-McDermid Syndrome Foundation event in Australia. $60 per person. To buy tickets email Megan on info@pmsfaustralia.org.au


Feb. 29 Ninth annual World Rare Disease Day: Join us in making the voices of rare diseases heard

 

Feb. 29-March 3 Rare Disease Week on Capitol Hill, Washington, D.C. #RareDiseaseDay


March 9-12 3rd international congress on research of rare and orphan diseases, Barcelona, Spain

 

March 14-15 Patients as Partners, Philadelphia, Pennsylvania. PMS parent Megan O'Boyle attending. Info here.


April National Autism Awareness Month


April 2 World Autism Awareness Day


April 15 Did you update your profile in the PMS International Registry? Do it before the end of the year


April 16 East Midlands Family Day, White Post Farm, Farnsfield. 11 a.m. Contact Victoria victoriafeddersen@gmail.com or 07772 528586


April 21-22 World Orphan Drug Congress USA, Hilton, Washington, Washington, D.C.


May Mental Health Awareness Month


May 10 Shopping online for an upcoming graduation gift? Shop iGive.com or Amazon Smiles and choose Phelan-McDermid Syndrome Foundation as your charity of choice. Find out more here


May 11-14 IMFAR 2016 Baltimore Convention Center, Baltimore, Maryland. PMS parent and Research Support Committee Chair Geraldine Bliss attending


May 14 PMSF UK / High Five joint North West Family Day. Martin Mere Wetland Center. 10 am. Contact sarahkiley@btinternet.com.


May 20 Not sure if you want to become a registered member of the PMS Foundation? It's free, and there are lots of benefits? Follow the Membership link in the menu list on the left side of this page


June 18 Northern Ireland / Ireland Family Day. 11 a.m. Alley Cats, Coleraine and The East Strand, Portrush. ontact Rosie at rosiechs@hotmail.com or 07879 436 743

 

July 20-23, 2016 PMSF International Conference, Caribe Royale Hotel and Conference Center, Orlando, Florida

 

September World Alzheimer's Month

 

Sept. 21 World Alzheimer's Day

 

October Learning Disabilities Awareness Month

 

Oct. 22 North East Family Gathering. 12:30-3:30 p.m. The Ark@Crawcrook, Main Road (B6317), Ryton, Tyne & Wear. Contact Gemma Smith Jibberjabba2@gmail.co.uk or 07971468599.

 

Nov. 15-17 World Orphan Drug Congress Europe, Sheraton Brussel Hotel, Brussels, Belgium


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