February 29th - Rare Diseases Day!
Today is Rare Diseases Day!
This years theme and slogan: Patient Voice - Join us in making the voice of rare diseases heard
The Rare Disease Day 2016 theme ‘Patient Voice recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.
The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation. [Source].
Here is what you can get involved with on 7 Cups today:
Discussion: Living with a Rare Disease led by @Georgii1 and @DancingAlong
Location: Disability Support room
Time: 1pm EST / 6pm GMT
Discussion: Living with a Rare Disease led by @Casscass
Location: Guided Discussion Room (teen side)
Time: 2pm EST / 7pm GMT
Discussion: Knowing your Pain/Illness in Relation to your Life led by @Dillion
Location: Listener Community Room
Time: 4pm EST / 9pm GMT
Forum post: Share Your Experiences Living with a Rare Disease!
Information: Share and read about experiences living with rare conditions.
Forum category: Caregivers Support Community
→ Forum post: Top Tips for Caregivers
Forum category: Chronic Pain & Illness
→ Forum post: What do you wish people knew about your condition?
→ Forum post: Rare Diseases Day
→ Forum post: What would you like to say to your doctor?
Forum category: Disabilities Support Community
→ Forum post: What would you like to be able to explain to others?
Feed activity: Spread awareness and your stories via the #RareDiseases hashtag
Related: Calling all Caregivers for March 9th!
Discussion: Caregivers Meeting led by @lucy2
Location: Family Support Room (adult side)
Time: 12pm EST / 5pm GMT [on March 9th]
Teen caregivers! Contact @lucy2 to express interest in a discussion on the teen side!
Hope youll have a great day listening to and sharing with each other!
Keeping up to date with special events:
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@Dillion Thank you for this reminder. Such a great topic not only for those victims of rare diseases but also for us to understand more the experiences of the patient and everyone in his or her circle of beloved ones.
Anyone have or have dealt with muscular dystrophy? I have 13 relatives that I've known personally effected by this disease (8 of which have passed on). It not only effects the physical body, but the mental capabilities to some extent depending on how severe.
My father passed away from the rare disease Acute Interstitial Pnuemonia which attacks the lungs and has no treatment or known cause. Bringing awareness to this rare disease is very important to my family and I
so glad to see this
Hi @Dillion @QuickJazz
Thank you bringing these brilliant discussions throughout today.
Lucy2
Have posted to 7 Cups social media!
Is there a website or place to know about rare diseases? 
Hey @sweetrosa1987 ! Yes, there is a post linked in the original post above that has a list of places to check out (but you can click here to take a look too). In addition, here is a website for people with rare diseases to connect with one another [available in six languages].
@QuickJazz Thank you so much!!!! :):):)
I have a rare condition and want to know anyone that also has a condition that I'm here to talk to or listen ☺
I do not have a rare disease, or even a disease per se. Eczema is a quite common condition, but still may impact those who have it negatively in any and all situations.
