SynGAP10 weekly 10 minute updates on SYNGAP1 (video)
LOTS OF NEWS - 1055 Patients, it’s #SyngapCensus Day! #S10e54

LOTS OF NEWS - 1055 Patients, it’s #SyngapCensus Day! #S10e54

April 1, 2022

Census was launched today: https://www.syngapresearchfund.org/post/syngapcensus-2022-update-70-in-q1-2022 

Industry news!
- Fintepla for LGS!  Great news for our LGS folks. https://twitter.com/cureSYNGAP1/status/1508573464810074113
- Tevard licensed tech from Prof. Jeff Coller. https://twitter.com/TevardB/status/1509511595663282178 

We announced models to two labs with RDMM and Hasan, thank you! https://www.syngapresearchfund.org/post/syngap-research-fund-srf-announces-grants-to-dr-kurt-haas-and-dr-graziella-dicristo-in-partnership-with-canadas-rare-diseases-models-and-mechanisms-network-rdmmn

Thank you Julie for your help making mice, we are really having fun accelerating science.  Thank you JR, Hans and Marta for joining meetings with a company to talk about other options for SRF.  All costs $.

Global: Victoria is at Dravet in Spain with Katrien from the Netherlands.  How cool is that?  Denmark is next week.

BTW, remember episode 48 (google #S10e48) I got another call, the ICD-10 debacle continues.  We are so lucky to have this code, USE IT.  I had two meetings this week looking at health economics, this code is showing up and it is going to help us understand cost and find doctors.  USE THE CODE… F78.A1

Probably Genetic, our partnership there continues and good things are coming, over 1,000 people have taken that survey and we are going to reach out to 40 people who we think need to pursue testing… PUSH OUT THIS LINK: https://syngap.fund/maybe

Advice time:

  1. Build #TeamYourKid
    1. Our kids don’t get simpler or smaller
    2. Babysitters and community members who know them now are their advocates later
  2. Double up on Neuros (unless you being seen by rockstars who are close)
    1. Everyone needs a good local neuro, few have them, so keep that relationship, both for higher quality care and for someone close in emergencies.
    2. If you have the time and the insurance, it's also a good idea to also be seen by a regional medical center. This is for three reasons
      1. Second opinions never hurt
      2. The regional folks will see more patients and are in an academic setting, so they are more likely to see patterns and publish case studies.
      3. When it's clinical trial time, companies won't call local doctors, they will call regional medical centers, you want to be on their list.

Reminder in last episode (google #S10e53) for all the events this year, but coming up fast:

  1. Jackie’s webinar on Severe Behaviors, Wednesday April 6th.  https://us02web.zoom.us/webinar/register/WN_5ojt2t3PSCWqGROpGaxVEw 
  2. Dr. Anderson’s webinar on Stem Cells, Thursday April 28th. https://us02web.zoom.us/webinar/register/WN_23J7Zy22R_-yDrz8RJHXHg 
  3. 2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating!  Sign up now: https://syngap.fund/sprint2022 

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast 

Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 

Episode 54 of #Syngap10 - April 1, 2022

#SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology


Happy Epilepsy Awareness Day! #S10E53

Happy Epilepsy Awareness Day! #S10E53

March 25, 2022

Three events to plan on:

  1. Jackie’s webinar on Severe Behaviors, Wednesday April 6th.  https://us02web.zoom.us/webinar/register/WN_5ojt2t3PSCWqGROpGaxVEw 
  2. Dr. Anderson’s webinar on Stem Cells, Thursday April 28th. https://us02web.zoom.us/webinar/register/WN_23J7Zy22R_-yDrz8RJHXHg 
  3. 2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating!  Sign up now: https://syngap.fund/sprint2022 

Here are the dates to think about for the rest of the year…

April 7-8

5th Dianalund International Conference on Epilepsy - Implementing Epilepsy Genetics in Clinical Practice

Denmark

April 30

Sprint for Syngap

Worldwide

May 13-15

EpiCon Convention

Nashville, TN

June 5 – 6

Epilepsy Foundation Pipeline Conference

Santa Clara, CA

June 11

Million Dollar Bike Ride

Philadelphia, PA

June 21

Splash for Syngap

Worldwide

June 23-25

2022 DSF Family & Professional Conference

Fort Worth, TX

June 25

Dr. Perry presenting exclusively to Syngap1 families

Fort Worth, TX

July 11-13

World Orphan Drug Congress

Boston, MA

September 26

Global Genes Patient Advocacy Summit

San Diego, CA

October 8

Scramble for Syngap

Travelers Rest, SC

October 8

2nd Annual Caren Leib Gala

New Jersey

Oct 31-Nov 1

Epilepsy Awareness Day Expo

Anaheim, CA

November 2

Epilepsy Awareness Day Disneyland

Anaheim, CA

November 12

Sparks of Hope

Atlanta, GA

November 29

Giving Tuesday

Worldwide

December 1

Scientific Meeting hosted by SRF

Nashville, TN

December 2-6

AES & the 4th Annual Synapse Roundtable

Nashville, TN

 

Thank you to #UFDTech for your fundraiser today, check it out: https://www.youtube.com/watch?v=Whkborgb-90 

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast 

Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 

Episode 53 of #Syngap10 - March 25, 2022

#SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology

 


We are starting to find lots of adult patients, what now?

We are starting to find lots of adult patients, what now?

March 21, 2022

SRF UK is taking off, support Trustee Ray’s fundraiser https://www.justgiving.com/fundraising/srfuk 

SRF Cell Line project is working! https://www.syngapresearchfund.org/post/another-srf-contribution-to-syngap1-research-patient-derived-cell-lines-to-test-treatments 

Sign up for Ciitizen, make sure you are included: https://ciitizen.com/Syngap1 

2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating!  Sign up now: https://syngap.fund/sprint2022 

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast 

Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 

Episode 52 of #Syngap10 - March 21, 2022

#s10e52 #Ciitizen #SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology


Putting this work in perspective…

Putting this work in perspective…

March 14, 2022

Mike takes a break from all the updates to put things in perspective. This work is critical.

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast 

Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 

Episode 51 of #Syngap10 - March 14, 2022

#s10e51 #SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology


Another week in 5th gear, buckle up

Another week in 5th gear, buckle up

March 5, 2022

Post RDD - 

- Last day of Feb, b/c rarest day

- What did we do?

   - Raised $25k!

   - Newsletter went out!  Read and subscribe please https://twitter.com/cureSYNGAP1/status/1498256918371917824

   - Jess and Ray represented the Global Team at PWC/Edinburgh https://twitter.com/Cdnchick74/status/1498275297011056644

   - Jansen and Kimberly were shared, and that is a win for all of us.

       - https://variantyx.com/2022/02/25/jansens-story/

       - https://www.raredisease.org.uk/rduk-news/our-syngap1-story/ 

    - Announced #CouldItBeSyngap1 300+ already https://www.syngapresearchfund.org/post/syngap-research-fund-deploys-coulditbesyngap1-screening-tool-in-partnership-with-probably-genetic 

   - Webinar madness!

      - Two down

      - https://www.syngapresearchfund.org/webinars/the-use-of-milk-exosomes-to-increase-the-expression-of-syngap1-expression-in-syngap1-mice 

      - https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program -> https://syngap1.rare-x.org 

    - Two to go

      - Saturday: https://www.syngapresearchfund.org/webinars/estrategias-para-quitar-el-panal 

      - Thursday March 10th! https://www.syngapresearchfund.org/webinars/syngap1-service-dogs -> syngap.fund/julian -> https://secure.givelively.org/donate/syngap-research-fund-incorporated/service-dog-for-julian

    - SEVEN (7) New families this week

      - Six welcomed today in post https://www.facebook.com/groups/376862123195518/posts/939459816935743

      - One not on FB, but reached out after finding us… via this podcast!  Yeah.

 

That’s right, there is a work outside of Facebook, we are on Twitter and LinkedIn and Tiktok and Youtube too!

- Follow us everywhere with @cureSYNGAP1 

- We are doing a #followfriday on Twitter, so get on that, and meet some families and share your story… you never know where those go.  https://twitter.com/cureSYNGAP1/status/1499751768435175429?s=20&t=CcoXMTECIG6MZVzRo-IXqg 

- And it’s good for studies. I could only talk about people who were in the public domain here: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant

- Happy Birthday Kyle! syngap.fund/kyle Follow this channel: https://www.youtube.com/c/KelliKyle  

 

Thank you to SAB and CAB

    - We have stellar advisors, check them out: https://www.syngapresearchfund.org/home/our-team/sab and https://www.syngapresearchfund.org/home/our-team/team-clinical-advisory-board

    - They are working hard looking at some of the seven grant proposal we received!  It’s going to be a great investment in the future of our loved ones…

 

Sprint4Syngap!

- 2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating!

- Sign up now: https://syngap.fund/sprint2022 

- Get a shirt: https://www.bonfire.com/sprint-for-syngap-2022/ 

 

What else?

- ORCA, thank you Kali, we have one person left and then we are locked and loaded for the next phase of that important project.

    - Great meeting with Overcome and partnering on Canadian grants.

    - One family, older, needed a neuro and we got them hooked up in a day.  Love it.

    - One more survey, if you can for our friends at CNF: https://syngap.fund/cnf22 

 

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast 

Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 

Episode 50 of #Syngap10 - March 5, 2022

#s10e50 #sprint4syngap #CouldItBeSYNGAP1 #probablyGenetic #SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology


Rare Disease Day is Monday!  And here at SRF we can feel it all happening…

Rare Disease Day is Monday!  And here at SRF we can feel it all happening…

February 25, 2022

COOL START TO THE DAY

https://twitter.com/cureSYNGAP1/status/1496855893324926977?s=20&t=S7QHkcWewhu0hi-I_XlQBA
Grief in convo with Kali about Rare Disease Diagnosis.

NEWS

We dropped the Zempleni Presser!  How cool is this?  Cool enough for the Exosome Industry News to write about it https://twitter.com/ExosomeRNA/status/1496907785535049729

Zempleni Webinar: Milk exosomes to increase the expression of SYNGAP1 in SYNGAP1 mice March 3, 2022 @ 9am PT/12pm ET https://syngap.fund/zempleni 

More is coming soon.  We have a few press releases in the hopper!  One just made possible by a $70k donation from Unlock Defi https://www.unlockdefi.com/ thank you so much.  Learn more about that via this interview we did in November https://www.youtube.com/watch?v=A840uoG1Wj0 

 

PRESENTATIONS

Jess is presenting on SRF to the UK Community this weekend at Edinburgh, congratulations!

Marta gave a presentation at one of our Pharma partners all-staff for Rare Disease Day.  Thank you to her and congratulations.  It is powerful to talk about our disease.

The Data Sharing Panel was exceptional, if you missed it, watch the recording here:
https://syngap.fund/data

Get your EEG Tracings!  In EDF format. Just ask them at the lab, remember you have a right to your data in all Geographies.

 

AMAZING ASKS

Profs at Oxford and McGill have reached out with exciting opportunities.  Rarebase is getting noisy.  I’m told to expect a proposal from WCM and we have one from Finland.  We need more funding… start talking to families now.  We are asking Leon and Overcome to co-fund with us too.

 

FUNDRAISING

Suzanne in GA on Sparks of Hope
Julie in NC on Scramble
Nancy in NJ on Gala
YOU where you are on Sprint eg. Tavilla

2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating!

Sign up now: https://syngap.fund/sprint2022
Get a shirt: https://www.bonfire.com/sprint-for-syngap-2022/ 

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast 

Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 

 

Episode 49 of #Syngap10 - February 25, 2022

#datasharing #biorasi #EEG #ciitizen #SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology


Happy National Caregiver Day!

Happy National Caregiver Day!

February 18, 2022

The Data Sharing Panel next week will be epic, don’t miss:
https://syngap.fund/data
Tweet: https://twitter.com/curesyngap1/status/1493282864263090181

Use you ICD Codes!  F78.A1 if you want background:
https://syngap.fund/icd10 - https://syngap.fund/icd11 - https://syngap.fund/F78A1
SRF Case Study here: https://ICDCodeRoadmap.org 

Get your EEG Tracings!  In EDF format.

Make sure you connect with us to be connected with the community, either on our reg page or on Facebook:

https://syngap.fund/fb goes to https://www.facebook.com/groups/syngap
https://www.syngapresearchfund.org/families/connect-with-us 

Sign up for Ciitizen, make sure you are included: https://ciitizen.com/Syngap1

Zempleni Webinar: Milk exosomes to increase the expression of SYNGAP1 in SYNGAP1 mice March 3, 2022 @ 9am PT/12pm ET https://syngap.fund/zempleni 

2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating!

Sign up now: https://syngap.fund/sprint2022
Get a shirt: https://www.bonfire.com/sprint-for-syngap-2022/ 

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast 

Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 

Episode 48 of #Syngap10 - February 18, 2022

#datasharing #biorasi #EEG #ICD10 #F78A1 #ciitizen #SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology


It’s all coming together - data, trials, research.  Time is now to join in!

It’s all coming together - data, trials, research.  Time is now to join in!

February 14, 2022

The ABN webinar was solid, watch it here: https://www.syngapresearchfund.org/webinars/an-introduction-to-autism-brainnet 

Remember the Poduri grant, here is the press release if you don’t: https://www.biospace.com/article/releases/syngap-research-fund-announces-308-000-multidisciplinary-biomarker-grant-to-boston-children-s-hospital/

Sign up for Ciitizen, make sure you are included: https://ciitizen.com/Syngap1 

2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating!

- Sign up now: https://syngap.fund/sprint2022 

- Get a shirt: https://www.bonfire.com/sprint-for-syngap-2022/ 

Reminders:

- Great webinar coming up: the use of milk exosomes to increase the expression of SYNGAP1 expression in SYNGAP1 mice March 3, 2022 @ 9am PT/12pm ET https://syngap.fund/zempleni 

- This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast 

- Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 

 

Episode 47 of #Syngap10 - February 14, 2022

#trialdesign #braindonation #ciitizen #SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology


You can’t do this alone, don’t try.  But do Plan.  Lots of planning from SNTs to Brain Donation to Service Dogs.

You can’t do this alone, don’t try. But do Plan. Lots of planning from SNTs to Brain Donation to Service Dogs.

February 7, 2022

You can’t do this alone, don’t try.  But do Plan.  Lots of planning from SNTs to Brain Donation to Service Dogs.

HEADLINE: YOU CAN”T DO THIS ALONE, DON’T TRY

-Please don’t try to muscle raising a SYNGAP1 child, connect with the community, share tricks, joys and sorrows.  We cannot do this alone.

PLANNING

One parent just asked how to think about planning for the future, here is what I said.

  1. Part of the answer is a simple SNT (special needs trust) and Life Insurance payable to the trust, this is more affordable than you think.
  2. The desire not to burden your other kids is natural, but not always helpful. I'd leave that up to them, in most of the families that I have had the privilege of getting to know... at least one sibling WANTS to step up, and plans their life accordingly. Look at Nancy, just watch https://syngap.fund/caren
  3. Regardless of money, all of our kids will need state services throughout their life if we don't get a therapy into their brains (this is what SRF works on). And even then they will need support, but less. At this point, I would ask yourself two things:

         - 3a. Are you going to live in this place for good? If so, get all over services in your state. The rules and realities vary considerably by state.

         - 3b. If you are flexible, is there another place you could live and what are services like there? I've seen a few families take a deep breath, ask these questions and move.

  1. Our kids don't get less complicated, I think you have signed up for Ciitizen, but whoever cares for your loved one will be so grateful that you have put all his medical records in one place. https://ciitizen.com/Syngap1
  2. Get to know this community, we have a STRONG SRF Crew having other families close is huge. Not to mention they know the rules in your state (see #3a).

WEBINARS

-An Introduction to Autism BrainNet Thursday, February 10 @ 9 am PT/12 pm ET https://syngap.fund/ABN 

-The use of milk exosomes to increase the expression of SYNGAP1 expression in SYNGAP1 mice March 3, 2022 @ 9am PT/12pm ET https://syngap.fund/zempleni 

SERVICE DOGS

SRF works with Meridus K9, if you are interested, please reach out to Cecilia! https://www.meridusk9.com/ 

FUNDRAISING IS ALWAYS IMPORTANT

- https://syngap.fund/hopeforhadley $12.5k

- https://Syngap.fund/joinforjackson $800

- https://Syngap.fund/raylan 

 

2nd Annual #Sprint4Syngap is coming April 30, 2022.

- Sign up now: https://syngap.fund/sprint2022 

- Get a shirt: https://www.bonfire.com/sprint-for-syngap-2022/ 

 

THIS IS A PODCAST - SUBSCRIBE!

- Subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10 if you want a direct link for Apple: https://syngap.fund/10a 

Episode 46 of #Syngap10 - February 7, 2022

#servicedogs #braindonation #ciitizen #privacy #SYNGAP1 #F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology


Old School Syngap10 - Lots of great content in 10 minutes.  Fundraising. Blogs. Webinars. Patient stories. Ciitizen.

Old School Syngap10 - Lots of great content in 10 minutes.  Fundraising. Blogs. Webinars. Patient stories. Ciitizen.

January 28, 2022

Old School Syngap10 - Lots of great content in 10 minutes.  Fundraising. Blogs. Webinars. Patient stories. Ciitizen.

IT ALL TAKES MONEY

- Emily’s Fundraiser #HopeForHadley https://secure.givelively.org/donate/syngap-research-fund-incorporated/hope-for-hadley

- 2nd Annual Sprint for Syngap is coming April 30, 2022. 

WEBINARS

- La intención comunicativa en SYNGAP1 el sábado 5 de febrero | 9am Miami / 3pm Madrid https://syngap.fund/intencion

- An Introduction to Autism BrainNet Thursday, February 10 @ 9 am PT/12 pm ET https://syngap.fund/ABN

- The use of milk exosomes to increase the expression of SYNGAP1 expression in SYNGAP1 mice March 3, 2022 @ 9am PT/12pm ET https://syngap.fund/zempleni

BLOGS

- Diapers: https://www.syngapresearchfund.org/post/diapers-pull-ups-for-older-kids-a-moms-experience

- Missense: https://www.syngapresearchfund.org/post/syngap1-frequent-de-novo-missense-variant-alert-study-opportunity-for-p-gly344

   - https://www.genome.gov/sites/default/files/tg/en/illustration/missense_mutation.jpg

MUTATION STORIES

- c.3583-6G>A Europe and East Coast, connected!

- c.333del and c.490 C>T Facebook Groups

- Data https://docs.google.com/spreadsheets/d/13dAPdXJnF-ST4lJnKrgxEJ_03e7shyXg7jwiqeXSR7c/edit?usp=sharing 

CIITIZEN 

- Privacy https://ciitizen.com/privacy

- Sign up https://ciitizen.com/SYNGAP1 

- Nobody does it better.

EXTRA CREDIT

- Gene Fixers was VERY GOOD.  Here is the replay.  This is worth a listen. www.clubhouse.com/room/m26dGYr4?utm_medium=ch_room_xerc&utm_campaign=RgMbPQTckJlMoxenxVxCiQ-38225

REMEMBER

- Raise funds at https://syngap.fund/give

- Subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10 if you want a direct link for Apple: https://syngap.fund/10a 

Episode 45 of #Syngap10 - January 28, 2022  

#braindonation #specialneedsdiapers #missense #ciitizen #privacy #SYNGAP1 #F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics


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